Discussions By Condition: I cannot get a diagnosis.

Joint pain -- walk with a cane at 25 years old

Posted In: I cannot get a diagnosis. 42 Replies
  • Posted By: Anonymous
  • November 3, 2006
  • 11:06 PM

Joint pain -- 25 years old and walk with a cane

Hello all.

I just joined when I read another member's problems that sounded exactly like problems I had a few years ago. Now I'm hoping that someone out there will recognize what I'm suffering from now, and can point me in the right direction.

First a little background info. I'm a 25 year old female, 5'2" 115lbs, married but no kids, living in Southern California. My family has a strong history of autoimmune diseases. 4 of my 5 siblings have at least one autoimmune diseases, and several members of my extended family have autoimmune diseases. I got my first autoimmune disease a month before my 12th birthday, alopecia areata. I've had several flares of that off and on since then, but the hair has always grown back eventually. The last alopecia flare that I was aware of was when I was 20, but I've been losing a lot of hair recently, so I'm just waiting to find the new spot now.

In September 2003 I was diagnosed with my second autoimmune disease, Hashimoto's Thyroiditis. I was hypothyroid, but with medication I've been able to get all my numbers fairly well controlled. I also have a heart murmur.

In January 2004, I caught a bad flu and ran a fever for about a week. That was when my current batch of problems started up. After that flu, I started having joint pain my knees and hips, and some numbness in my toes. Since 2003, I've developed a lot of pain in my back, and sometimes in my shoulder and elbow joints, but never in the small joints of my hands or feet. The knees and hips are still the major pain locations.

The joint pain comes in three varieties: the sort of joint pain you have when you're running a fever, and your joints ache; a sudden, sharp, stabbing pain that will come out of nowhere and then leave immediately, often happening while there's other joint pain going on; and a severe pain that I can only describe as the feeling immediately after you fall down on concrete, only without the adrenalin rush and lasting for hours and hours.

The pain is usually worse later in the day, though I'm often very stiff, usually without pain, in the morning. Sitting for too long (on a plane, for instance) is very painful, and makes it difficult to walk afterwards. Too much walking or exercise will make my joints hurt too. The only exercise I can manage is 20 minutes of swimming or very light pilates, or 20 minutes of walking if my joints aren't already in pain. There is extreme fatigue that goes along with the pain, and I often feel very cold (for instance, it's 76 degrees inside right now, my temperature is 98.5, but I'm wearing thermals, two pairs of socks, slippers, a sweatshirt, a hat, and I'm wrapped in a blanket).

As I'm coming to the end of my third year with this, I've found some patterns. My health is the best during the summer. Summer 2003 and 2004 I had almost no symptoms at all. Summer 2005 I had June and July without any symptoms. This summer there was a gradual lessening of my symptoms through June, July, and August. I only had to take pain medication once every two or three days, and the issues of feeling cold went away entirely from May until about two weeks ago.

Any sort of infection will set off a flare. If I run a fever, my symptoms will get a lot worse for at least 4 months straight. My doctors won't give me a flu shot, since they don't know what it will do to my immune system. This is my first autumn since this thing started that I have not caught a bad flu or cold, or run a fever over 100 degrees (99.8 or so is pretty common with me, though most of the time my temp is between 98.4 and 98.6), so it's interesting to see how things are going. Instead of a sharp jump in symptoms following a flu, I've instead had a gradual decline starting near the end of August. I'm back up to pain medication every single day, sometimes twice or three times a day. I was working full time through the end of September (I work from home for my father, so he is flexible with my hours), but over the past month I've been able to put in less and less time every day.

I am currently on prescription pain medication which I can take up to three times a day, and a prescription muscle relaxant that I take right before bed to help me sleep through the night without being in too much pain to sleep. I'm also on a prescription for my stomach, since the pain med makes me nauseous and I was losing weight on it. I'm on thyroid medication for the Hashimoto's, and birth control since my doctors have made it quite a point that I "should not attempt an unsupervised pregnancy", in their words.

Last May I also broke down and bought a cane. I usually only need it when I know I will be walking a lot, at airports (the sitting does quite a number on me), and sometimes in the evenings when the pain is really bad. Still, I'm 25 years old and I need a cane to walk. :(

I have gone through more doctors than I can count at the moment, but so far no diagnosis. The doctors have ruled out MS and Rheumatoid arthritis, and think Lupus is unlikely since I haven't had any skin issues. I have had MRIs of my brain, an x-ray of my spine, an EMG, EKG, and EEG, and more blood tests than I can name. With the exception of my thyroid antibodies, which are still off the chart, everything has come back normal -- including my white count at the same time that my thyroid antibodies were off the chart, which I thought was odd. If my thyroid antibodies are that high, shouldn't my white count be elevated too?

I have had trigger point injections, which hurt like ***l and didn't help at all, and 8 months later I still have a sunken and painful spot about the size of a quarter on my hip where one of the injections went. Pain meds thus far have been pretty good at keeping things under control (though not pain-free), and I had a week dose of steroids last February that helped lessen my symptoms for a few weeks. During the summer I swam every other day and that seemed to help. Now that it's too cold to swim, I try to do a ballet-type warm up and stretching at least every other day, but often I'm too tired or in too much pain to be able to do it. When I do manage to, I can usually go a few extra hours without pain meds the next day, but that's the only difference I've noticed.

I've gotten to a point where I can manage the symptoms, but what I want now is a diagnosis. I want to know what this thing is, so I can know what to expect in the future. I've had a few unscrupulous doctors try to pawn off bad diagnoses on me. The first was peripheral neuropathy, which I believed for a long time until a new doctor did the EMG and disproved that. The second was Fibromyalgia, which I don't fit the diagnostic criteria for. At this point, I'm only interested in a diagnosis that has test results to back it up and that matches my symptoms.


So, if anyone actually made it this far, what I'm looking for are suggestions of other diseases that I should look into. I have a fairly good set of doctors right now that are willing to test for anything that sounds like a match with my symptoms (the last one was Ankylosing Spondylitis, which the x-ray more or less ruled out), but they themselves are out of ideas on what to test for. So if any of this sounds familiar to anyone, please, please let me know. At this rate of decline I figure I am going to need a permanent handicap parking permit by the time I'm 30. I've also given up on the idea of having children.

Thanks in advance,
Ryot

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42 Replies:

  • Do you by chance drink or use thing's containing fake sugar? If so you can look into Aspartame Toxicity, i know it can cause some of your symptom's. Also you should look into them checking your vitamin level's or start taking one if your not. Vitamin d vitamin c vitamin k deficiency's can all lead to joint pain.
    Anonymous 42789 Replies
    • November 4, 2006
    • 00:16 AM
    • 0
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  • Kaytlan, thanks for replying. I do not drink or consume anything with fake sugar. I've had stomach problems in the past and with the thyroid issues now, I'm very careful about reading food labels. I'm home all the time, so it's pretty easy to monitor what I'm eating. I drink soda maybe once or twice a month, if that, and even then never a diet soda, which is where I understand most people get their Aspartame? I had my vitamin levels checked during the first year of this disease, and everything came back normal. I take a multivitamin every day, along with an additional vitamin C supplement. My doctors seem fairly sure that it's autoimmune related, given my history with autoimmune diseases, and given the way my symptoms change after a viral infection. I can ask them to check my vitamin levels next time I go in for bloodwork, though. Thanks again,Ryot
    Anonymous 42789 Replies
    • November 4, 2006
    • 00:28 AM
    • 0
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  • Np:) hmmm rule out the 2 easy and it gets cloudy. There are so many possible autoimmune its dizzying to think about. Only other thing i can think of is to make sure they also give you a saliva test to check your hormone's.The take home and swab 4 times in a day work best to figure out what your hormone's are doing. The 1 time blood test for hormone's ive read isnt all that accurate a picture. For pain management hot epson bath's work wonder's and my friend also uses shark oil capsule's and a ginger supplement for her joint pain. Good luck to you, hope you get better. Yah diet soda's are the leading evil in that toxicity.
    Anonymous 42789 Replies
    • November 4, 2006
    • 00:58 AM
    • 0
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  • This will probably not be of much use but I suffer from daily joint pain and have for over two(2) years now. Initially, they suspected and auto-immune disease, but subsequently ruled that out. I've have MRI's, bone scans, EMG's, all the blood work, etc. and that can't come close. They can't even control the pain oftentimes which is so severe, I just cry in agony. MY joint pain, however, is limited to my ankles and knees with radiating pain in the legs in between. Now, to you. For obvious reasons, I spent a lot of time doing research on this and my current theory is that a case of walking pnemonia which I incurred many years ago without my own knowledge resulted in a breakdown of the immune system severe enough to cause havoc with the joints, but not potent enough to show on any currently known lab test. Unfortunately, if this is the case, until a test is found or a different cause for your condition is found, all you can do is control the pain. Sorry and Good Luck.
    Anonymous 42789 Replies
    • November 5, 2006
    • 08:47 PM
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  • Dear Ryot,I was surprised to read about your pain because in many ways it is very similar to mine. I'm not responding in any way, offering up any advice. I'm in the process, the beginning of my stages of finding out what's wrong with me.What surprised me was your family's history of autoimmune diseases. I too have a family history which is similar. My first autoimmune disease came about when I was 18. It is granular annular which is a skin disorder and causes large patches of thickened skin on my legs. Luckily, they don't hurt at all and I've gotten away with only have two big ones. People always will ask me what they are, even strangers when I'm wearing cooler clothes in the summer. It's quite bothersome, but I try not to let it bug me.I also have low thyroid and have wondered about Hoshimotos. Since I'm in the beginning stages of learning about what I might have, then this might be one of the problems. I too am often cold and feel numbness in both my toes and fingers.I can certainly understand your frustration. You sound like an attractive girl, which I am too, and it's very hard for people to look at someone like us and comprehend the use of a cane. I could use one of those. I make jokes.....I say, "If I fell, I would litterally say, 'I've fallen and I can't get up.'" And I think some people sort of believe me. I would have to display what I mean. Although I grimace a lot and move very slowly, I'm behind a computer in a small company and no one seems to notice as they watch their computer screens. I use to be a waitress. The idea of waitressing now sounds absolutely impossible.My pain is in my fingers which are swolen, my wrists, my toes, my ankles, my knees, my shoulders, and my neck. I would not be able to run to save my life, or look behind me very quickly. I am that crippled old woman, even though I'm only 30. I do have skin problems, like rashes on my elbows, blisters on my fingers and sometimes small ones in my inner eyes.I would love to discuss this further, but I have to go.Joint pain -- 25 years old and walk with a caneHello all.I just joined when I read another member's problems that sounded exactly like problems I had a few years ago. Now I'm hoping that someone out there will recognize what I'm suffering from now, and can point me in the right direction.First a little background info. I'm a 25 year old female, 5'2" 115lbs, married but no kids, living in Southern California. My family has a strong history of autoimmune diseases. 4 of my 5 siblings have at least one autoimmune diseases, and several members of my extended family have autoimmune diseases. I got my first autoimmune disease a month before my 12th birthday, alopecia areata. I've had several flares of that off and on since then, but the hair has always grown back eventually. The last alopecia flare that I was aware of was when I was 20, but I've been losing a lot of hair recently, so I'm just waiting to find the new spot now.In September 2003 I was diagnosed with my second autoimmune disease, Hashimoto's Thyroiditis. I was hypothyroid, but with medication I've been able to get all my numbers fairly well controlled. I also have a heart murmur.In January 2004, I caught a bad flu and ran a fever for about a week. That was when my current batch of problems started up. After that flu, I started having joint pain my knees and hips, and some numbness in my toes. Since 2003, I've developed a lot of pain in my back, and sometimes in my shoulder and elbow joints, but never in the small joints of my hands or feet. The knees and hips are still the major pain locations.The joint pain comes in three varieties: the sort of joint pain you have when you're running a fever, and your joints ache; a sudden, sharp, stabbing pain that will come out of nowhere and then leave immediately, often happening while there's other joint pain going on; and a severe pain that I can only describe as the feeling immediately after you fall down on concrete, only without the adrenalin rush and lasting for hours and hours.The pain is usually worse later in the day, though I'm often very stiff, usually without pain, in the morning. Sitting for too long (on a plane, for instance) is very painful, and makes it difficult to walk afterwards. Too much walking or exercise will make my joints hurt too. The only exercise I can manage is 20 minutes of swimming or very light pilates, or 20 minutes of walking if my joints aren't already in pain. There is extreme fatigue that goes along with the pain, and I often feel very cold (for instance, it's 76 degrees inside right now, my temperature is 98.5, but I'm wearing thermals, two pairs of socks, slippers, a sweatshirt, a hat, and I'm wrapped in a blanket).As I'm coming to the end of my third year with this, I've found some patterns. My health is the best during the summer. Summer 2003 and 2004 I had almost no symptoms at all. Summer 2005 I had June and July without any symptoms. This summer there was a gradual lessening of my symptoms through June, July, and August. I only had to take pain medication once every two or three days, and the issues of feeling cold went away entirely from May until about two weeks ago. Any sort of infection will set off a flare. If I run a fever, my symptoms will get a lot worse for at least 4 months straight. My doctors won't give me a flu shot, since they don't know what it will do to my immune system. This is my first autumn since this thing started that I have not caught a bad flu or cold, or run a fever over 100 degrees (99.8 or so is pretty common with me, though most of the time my temp is between 98.4 and 98.6), so it's interesting to see how things are going. Instead of a sharp jump in symptoms following a flu, I've instead had a gradual decline starting near the end of August. I'm back up to pain medication every single day, sometimes twice or three times a day. I was working full time through the end of September (I work from home for my father, so he is flexible with my hours), but over the past month I've been able to put in less and less time every day.I am currently on prescription pain medication which I can take up to three times a day, and a prescription muscle relaxant that I take right before bed to help me sleep through the night without being in too much pain to sleep. I'm also on a prescription for my stomach, since the pain med makes me nauseous and I was losing weight on it. I'm on thyroid medication for the Hashimoto's, and birth control since my doctors have made it quite a point that I "should not attempt an unsupervised pregnancy", in their words.Last May I also broke down and bought a cane. I usually only need it when I know I will be walking a lot, at airports (the sitting does quite a number on me), and sometimes in the evenings when the pain is really bad. Still, I'm 25 years old and I need a cane to walk. :(I have gone through more doctors than I can count at the moment, but so far no diagnosis. The doctors have ruled out MS and Rheumatoid arthritis, and think Lupus is unlikely since I haven't had any skin issues. I have had MRIs of my brain, an x-ray of my spine, an EMG, EKG, and EEG, and more blood tests than I can name. With the exception of my thyroid antibodies, which are still off the chart, everything has come back normal -- including my white count at the same time that my thyroid antibodies were off the chart, which I thought was odd. If my thyroid antibodies are that high, shouldn't my white count be elevated too?I have had trigger point injections, which hurt like ***l and didn't help at all, and 8 months later I still have a sunken and painful spot about the size of a quarter on my hip where one of the injections went. Pain meds thus far have been pretty good at keeping things under control (though not pain-free), and I had a week dose of steroids last February that helped lessen my symptoms for a few weeks. During the summer I swam every other day and that seemed to help. Now that it's too cold to swim, I try to do a ballet-type warm up and stretching at least every other day, but often I'm too tired or in too much pain to be able to do it. When I do manage to, I can usually go a few extra hours without pain meds the next day, but that's the only difference I've noticed. I've gotten to a point where I can manage the symptoms, but what I want now is a diagnosis. I want to know what this thing is, so I can know what to expect in the future. I've had a few unscrupulous doctors try to pawn off bad diagnoses on me. The first was peripheral neuropathy, which I believed for a long time until a new doctor did the EMG and disproved that. The second was Fibromyalgia, which I don't fit the diagnostic criteria for. At this point, I'm only interested in a diagnosis that has test results to back it up and that matches my symptoms. So, if anyone actually made it this far, what I'm looking for are suggestions of other diseases that I should look into. I have a fairly good set of doctors right now that are willing to test for anything that sounds like a match with my symptoms (the last one was Ankylosing Spondylitis, which the x-ray more or less ruled out), but they themselves are out of ideas on what to test for. So if any of this sounds familiar to anyone, please, please let me know. At this rate of decline I figure I am going to need a permanent handicap parking permit by the time I'm 30. I've also given up on the idea of having children. Thanks in advance,Ryot
    Anonymous 42789 Replies
    • November 15, 2006
    • 02:56 AM
    • 0
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  • Hi SarahK,Thank you so much for your reply. I was having one of those days yesterday -- thermals and three pairs of socks since I climbed out of bed in the morning, low grade fever throughout the afternoon -- and just hearing from someone who sympathizes helped a lot.Your experience with granular annular sounds a lot like the experience I had with alopecia areata as a teenager. Not physically painful, but certainly emotionally trying, and socially painful (kids in middle school can be so vicious). In the past year I've started being more up front about my illnesses, and I think if the alopecia came back now as bad as it was when I was 12, I would simply shave my head bald and live like that. It's so much easier to not care what people think when you're an adult, heh.You should definitely ask your doctor about Hashimoto's. My diagnosis of hypothyroid came first, and when I went home and did some reading on it, it seemed to me that Hashimoto's was fairly likely, given my medical history. So at the follow up appointment with my endocrinologist, I asked her if I should be tested for Hashimoto's. She waved me off and replied with something like, "Of course you have Hashimoto's, your antibodies were off the chart. It's the hypothyroid that we need to treat, though." So given your history of autoimmune diseases, and that you're hypothyroid, I would be surprised if it wasn't Hashimoto's. There are arguments for treating hypothyroid caused by Hashimoto's more aggressively than hypothyroid caused by anything else, so it's definitely worth knowing.As far as the cane goes, I was pretty emotional the day I bought it, but I've never regretted having it. I bought a simple black adjustable/folding one at a pharmacy, and a short while later bought a shoulder bag it would fit into. My health was fairly good this past summer, so I only used it when I knew I would be walking a lot (we have annual passes to Disneyland, and go fairly often), or when I traveled (sitting down on airplanes is murder on my knees and hips). With my health going back down hill now, I've been using it more and more. I work from home, so using it around the house when I need to hasn't ever been an issue. I've started using it when I go out to the store or to get the mail or whatever. I don't always need it, but it's nice to have it in my bag in case I do.It is frustrating, and while I've gotten pretty used to using it around strangers, I just realized that I still haven't used it around friends, other than my best friend, and that was only when she picked me up from the airport this past summer. With strangers, I noticed the strangest thing -- if I smile a lot, they give me really odd looks. I noticed this at Disneyland one night this past summer. I was having a blast just strolling around the park with my husband, and while I was in some pain and need to use my cane, I wanted to be there, and I was having fun. I got the most confused looks from people who I smiled at, lol. I think because I'm young and slim (and my husband tells me I'm pretty, but you just never can trust husbands, can you? ;) ), people see me walking with a cane and figure something must be terribly wrong with me, so why on earth would I be smiling? I dunno, I guess I just like confusing people like that sometimes. Also, people run into you a lot less when you're using a cane, and given how painful it can be when someone bumps into me, I really enjoy that particular plus.On to the pain itself... I haven't ever had any swelling or heat in my joints, which is one of the reasons (along with blood tests) that my doctors have ruled out rheumatoid arthritis. No skin problems either, though I'm suppose to be on the look out for them, which would point towards Lupus, according to my doctors. You should definitely go in to see someone when you can -- a rheumatologist might be most helpful. You've got significant symptoms, and you deserve to know what's going on with you, and you deserve treatment. (Which I'm sure you know... I guess I'm just repeating what I tell myself before every doctor visit, heh.)I would love to keep chatting with you, whenever you have the time to post. Like I said before, it helps just knowing there's someone who sympathizes.~Ryot
    Anonymous 42789 Replies
    • November 15, 2006
    • 11:36 PM
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  • "In January 2004, I caught a bad flu and ran a fever for about a week. That was when my current batch of problems started up. After that flu, I started having joint pain my knees and hips, and some numbness in my toes." i wonder if you also suffered from tiredness and POST EXCERTIONAL FATIGUE after that flu...along with the joint pain. I ask, as if you did.. its possible that you could have CFS also known as CFIDS (chronic fatigue immunity disfunction syndrome). There is a common CFS pattern of how it often starts in people that matches your history there (flu like illness.. then followed with CFS symptoms which can include joint pain). With CFS the more one does.. the more pain is triggered eg so could be worst after you've been up and about doing things. Numbness can also happen with CFS (numbness in toes is common with it.. esp Raynaud’s syndrome.. a condition in which ones toes get numb and their circulation is bad..esp when its cold or one is stressed). "Any sort of infection will set off a flare. If I run a fever, my symptoms will get a lot worse for at least 4 months straight." That also sounds like CFS .. as any stress put again the body can trigger a CFS "crash". (FM can also flare like that) With CFS.. it is now thought there is often also some genetic component to it..so hence there is often others in the family with autoimmune issues. "Still, I'm 25 years old and I need a cane to walk. :(" That commonly happens with CFS..due to it causing rapid weakness and tiredness. With CFS one can often have like FM (fibro) symptoms.. but they may not be bad enough (not enough of the trigger point queria met) to be diagnosed with FM. (thou some time ones with CFS do have it bad enough to have both diagnoses). If it does turn out that you have CFS...fortunately there should soon be a "diagnostic marker" for this illness and then people will be more easily be able to be correctly diagnosed. best wishesTania
    taniaaust1 2267 Replies
    • November 18, 2006
    • 00:13 PM
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  • Well, whatever you do, avoid soy. I have been seeing it as a cause of joint pain in various sites around the web after my brother swore to me that he went off eating soy foods (his wife was a vegan and they were eating a lot of soy) after he noticed he was suffering from joint pain. His joint pain went away almost immediately. While our family has no severe auto-immune problems we do seem to have a problem with the lesser auto-immune problems including arthritis. I found these references to soy and joint pain. It may not be the cause of your problems, but it might exacerbate it.http://www.soymilkquick.com/thyroiddisease.htmlhttp://www.mayoclinic.com/health/hashimotos-disease/DS00567/DSECTION=7http://healthlibrary.epnet.com/GetContent.aspx?token=dce59228-1023-4705-b1c7-b407be7b4fc6&chunkiid=38740P.S. soy makes both my father and I excessively sleepy after eating it. I mean I can wake up completely rested after a full night's sleep, eat my bowl of buckwheat cereal with soy milk on it (instead of rice milk--which is the usual) and feel so sleepy I have to go back to bed for several more hour's sleep as if I hadn't gotten enough sleep. I've heard this can be a sign of allergy--excessive fatigue or sleepiness.
    Anonymous 42789 Replies
    • November 27, 2006
    • 03:54 AM
    • 0
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  • Hi Tania, Thanks for your post. I've looked into both CFS/CFIDS and Fibromyalgia, and I don't match the symptoms for either. I've researched both of these in the past, but after I saw your post I took the "Do I have CFIDS?" questionnaire at cfids.org, just to reacquaint myself with CFIDS. A couple of questions in, there is this page: "Do you have at least four (4) of the following eight (8) symptoms?Weakness and exhaustion, lasting more than 24 hours, following mental or physical activityUnrefreshing sleepSubstantial impairment of short-term memory or concentrationMuscle painPain in the joints, without swelling or rednessHeadaches of a new type, pattern or severityTender armpit and/or neck lymph nodesSore throat"Of that list, the only one that I have is "Pain in the joints, without swelling or redness". As far as the fatigue goes, I definitely feel more fatigued when my joint pain is worse, but the way the fatigue in CFS/CFIDS is described, I'm not sure that mine is quite that bad. Since I've been living with this off and on for almost four years now, I've gotten used to what I can and can't do, and don't really compare that to any sort of "normal". I definitely can't do as much in a day during the winter as I can when I'm feeling my best during the summer, and I sometimes have to rest/nap after doing certain things, like showering, grocery shopping, or extensive house cleaning, etc. I wouldn't say my fatigue is of the "unrelenting fatigue" or "exhaustion lasting more than 24 hours" type, though. Everything else on that list is a no. So if I answer "No" to having at least 4 of the 8, this page comes up: "The strict case definition for CFS requires that a person have 4 (four) of these 8 (eight) symptoms in addition to six months or more of unrelenting fatigue. However, the definition is designed for research purposes. In treating individual patients, many health care providers apply the guidelines less rigidly. Please continue with the next question if you have three (3) of these symptoms. If you have only one or two, it’s unlikely that you have CFS." I've had similar results with regard to Fibromyalgia as well. The only common symptoms are joint pain lasting more than three months and some amount of fatigue, but none of the other symptoms match my symptoms, and I don't meet the diagnostic criteria. That said, my doctors are all very helpful in treating my symptoms while they look for the correct diagnosis, so in many cases I'm receiving the same treatment as I would if I did have FM or CFIDS. If you wouldn't mind, could you post here and let me know when there's a diagnostic marker for CFS? I would be interested in being tested for it, even if my symptoms don't really match. -- Unregistered, thanks for your reply as well. Funny you should mention soy. There are some studies out there linking consumption of soy with reduced thyroid production, so I've been completely soy free for at least three and a half years now, because of my Hashimoto's. I eat almost all of my meals at home, always read food labels, and make quite a bit of my food from scratch (bread, etc), so I'm pretty confident in my avoidance of soy. I can't believe how many things it's in these days -- trying to find peanut butter that doesn't include mass amounts of soy was quite a challenge. :P ~Ryot
    Anonymous 42789 Replies
    • November 27, 2006
    • 07:27 PM
    • 0
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  • Ryot,I hear you. Soy is in foods you'd never suspect. Like tortillas. Never would think of it being there as they are Mexican food and we don't tend to think of soy as something that would be in Mexican food.I wish you luck on finding the source of your symptoms. If I see anything more I will post it here.--C
    Anonymous 42789 Replies
    • November 27, 2006
    • 07:50 PM
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  • Hi,I had the same problem as you actually. Unlike you tho, I have not had any autoimmune diseases growing up, but I do have them in my family. I have had migrating joint pains exactly as you explain them for about 4 years now. It all started in my back. I would have trouble after doing my shopping. My back would ache like crazy. Then my ankles started, I blamed that on bad shoes. Then my other ankle started and I was sure it was my shoes. But when my knees started giving me a hard time, I remember thinking that I should see a doctor about it. Anyhow.. aches and pains are something we all have, and I let it go. Then about 18 months ago, I got real sick. I was overcome by fatigue. I couldt stay awake if someone told me I would be given a million bucks. I slept a whole week away only getting up to drink. After that week I started feeling better and I remember how good it felt to be hungry again. That afternoon I had some food and BANG, I was sick to my stomach. After that I couldn't eat or drink for days. I finally ended up going to the ER, and they found stuff in my urin, my lft's and wbc were both high and I was put into the hospital. They never did find out what the cause was. Anyhow I was strong enough to sit up straight after a week and got better after about 2 more weeks. My lft's returned to normal. During this whole period my joint pains were terrible.Then this summer I started having a funny tired feeling, kinda like the feeling I had with the flu, so I got scared and made a doctors appointment. Long story short; after 2 weeks I was alot worse.-Extreme Fatiuge-Change in bowel movements-Pain in my URQ-Acidic stomach-Pains in my lower back-Extremly cold feet (mid summer and my feet were so cold they felt like they were in the fridge for hours)I ended up being diagnosed with IBD. Now, I don't know that this is your case, but I do know that joint pains can be a problem for years before the IBD shows up. It is even a known fact that the joint pain can be worse then the stomach issues. It's probably not the same for you, but it is worth knowing about, just in case...Now for some questions...Have you had a blood test for ANA, IgM RF and so on? Do you have any symptoms like eye or skin problems. Allergies?Sinus problems?Constipation/diarreah?Ok.. I'm just gonna post this, and see where it takes us..Good luck!
    Anonymous 42789 Replies
    • November 27, 2006
    • 08:26 PM
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  • PiaSava, thanks for your reply. I haven't had any stomach or digestive problems (at least not in about 10 years), so I haven't really looked into IBD at all. No allergies or sinus problems either. I've had two instances of weird vision problems, and one instance of a weird skin problem, but nothing that lasted for more than a few hours, or reoccurred. As far as blood tests go, I just had a bunch of things retested earlier this week and haven't gotten the test results back yet. Last January I had a ton of tests done (10 tubes of blood in one sitting, whew!), including ANA and IgM, which both came back negative. Name the test and it's probably listed in the results from last January. :P The only things that came back abnormal were thyroid antibodies (I have Hashimoto's) and CMV IgG antibodies. I've pursued the CMV IgG antibodies with four different doctors and through my own research online, and haven't been able to find a thing about how that might be connected to the joint pain. I'll post again if anything comes back out of range from this latest round of bloodtesting. ~Ryot
    Anonymous 42789 Replies
    • December 2, 2006
    • 03:23 AM
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  • "As far as the fatigue goes, I definitely feel more fatigued when my joint pain is worse, but the way the fatigue in CFS/CFIDS is described, I'm not sure that mine is quite that bad. Since I've been living with this off and on for almost four years now, I've gotten used to what I can and can't do, and don't really compare that to any sort of "normal". I sometimes have to rest/nap after doing certain things, like showering, grocery shopping, or extensive house cleaning, etc. I wouldn't say my fatigue is of the "unrelenting fatigue" or "exhaustion lasting more than 24 hours" type, though. " Having to rest/nap after doing things like showering, grocery shopping etc is called "post exertional fatigue ..and is the main symptom of CFS, that is CFS fatigue. Something everyone with CFS gets, its just all the other things which can vary with this illness. The critera which are set for CFS are just ones that were agreed upon to set it apart from other illnesses in which fatigue also feature (this set criteria actually differs in different parts of the world and they keep changing it!) no one knows thou, all the variation of CFS fatigue.. eg just how minor this illness could actually be in some. There could be actually a huge range with this illness but until there are diagnosic markers in place.. I guess that wont be known. (There is no current diagnosic marker..eg a blood test etc.. that can be done to know if one has CFS. Thou about a mth back.. I heard they have just discovered one..and put a patent on it.. but I guess we'll have to wait and see). Also with CFS.. many people learn to adjust to the illness, hence dont push themselves past their limits in which the CFS (or the symptoms of it) gets worst or became troublesome. The statement saying "ive gotten used to what i cant and can do", that too is something an CFS person often will say. With CFS one learns to work within ones limits, to prevent a worsening of symptoms. My own tiredness with the CFS, how it is nowdays, thou bad CFS still (bad enough to have recently made a doctor rang an ambulance and take me to hospital), the tiredness I get dont usually nowdays last for 24 hrs!!! (hence I wouldnt even fit that current CFS defination with the way my illness is currently). The reason that is is cause Ive learnt how to work within my limits.. and will stop doing whatever Im doing and rest whenever I get worsening of my symptoms. In this manner ,the long fatigue recovery time of CFS may be prevented and hence a CFS person may not even be getting that if they have learnt to avoid their CFS triggers eg over doing things. (If you had CFS which wasnt bad and are not trying to study full time or not working full time, it is far less likely that you will be pushed into major fatigue levels in which you would be suffering from 24+ hr exhaustion). It is also very possible that you may be in denial of how bad your fatigue is. I myself was for a very long time. It wasnt until I came across a chart of CFS fatigue disability levels did I truely realise just how bad I was. I'd adjusted to my fatigue levels so so well.. that I'd just gotten used to things, just did less.. and didnt notice how little I actually was doing compared to the "normal" of others. By not doing much, I just didnt then suffer fatigue! Maybe you havent got CFS ..but from what I myself know about it, if i had your symptoms, I certainly wouldnt be positive I didnt have this minorally. If a diagnosic marker comes out for it.. you should get yourself tested, just to be sure you dont. A common CFS test which you may want to try yourself at home (make sure you are in a safe place thou), which is very commonly used by neurologists to help vertify CFS (most (90%?) CFS people cant pass it), is at http://en.wikipedia.org/wiki/Romberg's_test I too test positive to CMV IgG antibodies. At the bottom of that test result it says "Note: In reactivation specific CMV IgM antibodies may be present only at low levels or may be undetactable" So it appears that one can get this reactivated but not show the IgM. CMV IgG antibodies just means you've had a past infection of the cytomegalovirus. It was once thought (and still is by some) that CFS can be caused by CMV.. that was linked to CFS in the same way as Mono (EBV) was linked to CFS. http://www.nutritional-healing.com.au/content/condition.php?condition=CFS/FMS
    taniaaust1 2267 Replies
    • December 4, 2006
    • 11:05 AM
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  • Hi Ryot,The more I read your posts, the more you do sound like EDS. I and others show that same fatigue you describe, but are aware it isn't the CFS type. Fatigue is a huge problem in EDS, the pain and the extra effort to do things just knocks us out. Most of us ration our activities, plan what we should do over several days so we can get some stuff done at a slower pace. :) I hate it when something unplanned comes up as I sometimes have to put plans off to accommodate. I discounted CFS for the same reasons you did. My tiredness is not the same tiredness CFS have. And when i read other EDS describe their fatigue, well in didn't have to search any further and didn’t think may be I was just burnt out like people kept suggesting. I have been burnt out since I can remember; it is part of my life.If I had CFS I wouldn't be able to do what I do without collapsing. I to have no burning in the joints or swelling and have been given the all clear for rheumatoid arthritis or osteo. Just invisible joint pain that sure does hurt or causes my joints to give way.I am sure if you had an active auto-immune disease at the moment you would have some swelling in your joints or bowel problems or other inflammation somewhere.Some EDS sufferers have overlapping conditions. We are born with EDS, but like anyone else we can also develop a disease some time later. It just makes it harder to see the forest for the trees. :confused: Agape, :) searchingsam.
    searchingsam 54 Replies
    • December 4, 2006
    • 01:19 PM
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  • Heh, is it any wonder my doctors can't figure out what's wrong with me? I won't rule out CFS until I have a solid diagnosis of something else, but at this point I don't think it's a good fit. Part of the problem with trying to diagnose something based only on symptoms and not on any tests or physiological signs is that how I describe my fatigue or pain might vary hugely from how someone else would describe the same sort of fatigue or pain. For instance, I would say that the worst my pain has ever gotten is an 8 on a scale of 1 to 10. I was crying from the pain, and I couldn't do anything other than lay as still as possible in the most comfortable position I could find. I would consider a 10 on the pain scale to be passing out from the pain, and a 9 screaming from the pain. And yet I've seen people on message boards describe their pain as 10/10, and then go on to describe pain that would be a 7 or so on my pain scale. I'm not saying that anyone should be made to live with frequent level 7 pain, but when the primary feature required for a diagnosis can only be measured in a subjective way, making a diagnosis is that much more complicated. Anyhow, even if we go with the idea that the fatigue that I have is of the "unrelenting fatigue" or "exhaustion lasting more than 24 hours" type, that's still only 2 from the list of 8, maybe 3 if you count my infrequent muscle pain, but that's still not the 4 of 8 that's required by the clinical definition of CFS. I have read in several places that they're getting close to having a blood test for CFS, and once that's available I'll ask my doctors to check me out for it, just in case. I've been tested for things that fit even less than CFS does, so I doubt they'd have any problem with that. As far as adjusting my life to my illness, I think everyone with a chronic condition does that. There's no sense being in denial about what I can and can't do -- the last two times I did that I ended up running a high fever, which caused a flare in my symptoms that lasted 4+ months. I don't think adjusting to the level and type of activities you can handle currently is something that's unique to CFS sufferers. I'm sure people with EDS do it as well, as do people with Hashimoto's, MS, Lupus, arthritis, cancer, asthma, etc. Oh, and the Romberg's Test was interesting. I tried it out this morning, using a kitchen timer, and passed no problem. I think I was swaying a bit, but I didn't fall down. I'm pretty sure I had a neurologist do that same test on me a few years ago (before we ruled out neurological involvement), and I passed then too. SearchingSam, thanks again for all your help with the EDS stuff. I went to the message board you recommended and joined there as Ryot as well. I haven't posted yet, but I'm getting an introductory post together. EDS is definitely something I want to follow up on, and I'm hopeful that it will lead to some answers. Especially since this seems to be something that I share with all five of my siblings, it would be nice to know for all of us, for future reference. Of course, autoimmune diseases also run in the family. Four of my five siblings have one, and I have two diagnosed already. The family history and the way this current undiagnosed thing reacts to viral infections has led my doctors to think that it's autoimmune, but we don't have any definite blood work to back that up -- in fact, my blood tests have been rather odd, and that's another thing I'm following up on. Last January I had a ton of bloodwork done in one sitting, and there were a couple of odd outcomes. My thyroid antibodies were off the chart, as they always are (Hashimoto's being the second of my two autoimmune diseases), but my white count wasn't elevated, my ANA came back negative, and my sed rate was normal. I think I've mentioned this in this thread someplace already, but that struck me as really odd -- if my thyroid antibodies are so high that the lab doesn't even measure that high, doesn't that mean that I have an active autoimmune attack going on, and that my white count should be elevated, my ANA should be positive, and my sed rate should show inflammation? I haven't been able to get anywhere on that with my new rheumatologist (whom I started seeing in July) yet, but I just had everything retested about a week ago, and if the results come back the same I'm going to push her for an answer. If something is depressing my white count, that would be something to follow up on as well, I think. At this point, it's all about pulling on any tiny threads I can find, and holding out hope that one of them will eventually pan out. ~Ryot
    Anonymous 42789 Replies
    • December 5, 2006
    • 01:00 AM
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  • Ryot,I understand your need to get a western diagnosis for your condition, but is it really necessary? Will it change your symptoms? I doubt much would change as so many autoimmune diseases are poorly treated thru western medicine. I am an Oriental Medical practitioner and our approach to diagnosis is completely different. Have you considered seeing an acupuncturist who is also a certified Chinese Herbalist? I really think it would help some of your symptoms as Chinese Medicine is all about righting the inbalance in the body. There are many different causes of pain, and with your other symptoms a qualified practitioner can come up with a treatment designed to help you. Please visit www.acufinder.com and find out more information. You can plug in your zip code to find a practitioner near you. Chinese medicinal formulas are very effective and MUCH safer compared to western pharmaceuticals. And acupuncture is very relaxing and helpful for chronic pain syndromes as well as balancing the body.My last comment is to drink tons of water daily. I wish you the very best of luck.Doctor of Oriental Medicine
    acuann 3080 Replies
    • December 5, 2006
    • 03:27 AM
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  • Hi Acuann, thanks for your reply. But I have to say, I do feel that a "western" diagnosis is extremely important, and unquestionably necessary in my case. I have two other autoimmune diseases already, both of which have been diagnosed and treated successfully by western doctors. Without diagnosis or treatment, I'm fairly certain I would have committed suicide due to the complications surrounding my first autoimmune disease (this was 13 years ago, I'm in a much better mental state now). And without diagnosis and treatment for Hashimoto's, my second autoimmune disease, I likely would have ended up in the hospital in a coma by now. My knowledge of Chinese medicine is fairly limited, but I can't see any way that my Hashimoto's could be treated by anything other than western pharmaceuticals. My body is attacking and killing my thyroid, which in turn prevents my thyroid from making enough thyroid hormone. I need to take synthetic thyroid hormone every day to make up for the thyroid hormone my own thyroid can't produce. The diagnosis was correct, and the treatment has been successful. I have a lot of frustrations with the state of medical care in the United States, but I believe I would be dead without it, so I try to work within the system. I believe that continuing to fight for a diagnosis is the right thing to do, even if in the end the treatment is the same and the prognosis is unknown. At least then I'll have a name for it, and the possibility for better treatment. And now with the possibility of EDS, it has become even more important for me to get a diagnosis. If I have EDS, then I am quite certain that all 5 of my siblings have EDS as well. My 13 year old brother who is in physical therapy because when he tries to do push-ups, his shoulders dislocate, my sister who is competing in marshal arts, my brother whose first child is on the way, my other brother and sister, my 32 first cousins (27 first cousins on my mother's side, 5 on my father's side) -- they ALL deserve to know if I have a genetic disease that may be affecting them as well. My current rheumatologist is also a certified acupuncturist, and I have discussed other treatment options with her, including acupuncture -- while we continue to look for a diagnosis. The team of doctors I'm working with currently are interested in treating my symptoms (which is definitely something that can't be said for all western doctors), and are open to exploring other treatments and ways to manage my pain. But they're also interested in finding what it is that I have, and that isn't a fight I'm ready to give up yet. And drinking more water is always a good recommendation, but if I drink any more than I currently do I'm going to float away. I work from home, and have a fridge with filtered cold water in the door, about four feet from my desk. I drink 10 to 20 8oz glasses of water in a day. Keeps me hydrated, and it's a good excuse to get up from my desk and stretch pretty frequently. ~Ryot
    Anonymous 42789 Replies
    • December 5, 2006
    • 04:20 AM
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  • I didn't mean to seem flippant about the whole diagnosis thing. You are right, it is important...but my point is just that Western treatments can sometimes bring about further problems and disorders...in other words, all pharmaceuticals have side effects and it can become a downward spiral of overmedication leading to more problems and eventually something has to give... I believe strongly in complimentary medicine. So yes, take your meds and get your diagnosis, but find other modalities which may help you. I am glad your rheumatologist is a lic. Acupuncturist, but in some states MD's can get a license with just 100 hours of training. This is not enough training to do Oriental medical diagnosis by any means (I went through over 2000 hours of training to be a Doctor of Oriental Medicine and am certified in both acupuncture and Chinese herbal medicine). Western medicine is just not successful in treating pain. Medications help temporarily, but cause side effects and are quite toxic. So I suggest you try alternative methods for dealing with your pain. I have treated a few clients who came to me in wheelchairs and canes and left without them so I know it can help. Chinese Medicine is several thousand years old and it works!Okay, I am done with the sales pitch:) Best wishes to you.
    acuann 3080 Replies
    • December 5, 2006
    • 05:19 AM
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  • Have you ever been tested for Late stage Lyme disease? Ask you doctor to run a western bolt test!! Your symptoms are very simular to one of my friends that has Lyme disease.Joint pain -- 25 years old and walk with a caneHello all.I just joined when I read another member's problems that sounded exactly like problems I had a few years ago. Now I'm hoping that someone out there will recognize what I'm suffering from now, and can point me in the right direction.First a little background info. I'm a 25 year old female, 5'2" 115lbs, married but no kids, living in Southern California. My family has a strong history of autoimmune diseases. 4 of my 5 siblings have at least one autoimmune diseases, and several members of my extended family have autoimmune diseases. I got my first autoimmune disease a month before my 12th birthday, alopecia areata. I've had several flares of that off and on since then, but the hair has always grown back eventually. The last alopecia flare that I was aware of was when I was 20, but I've been losing a lot of hair recently, so I'm just waiting to find the new spot now.In September 2003 I was diagnosed with my second autoimmune disease, Hashimoto's Thyroiditis. I was hypothyroid, but with medication I've been able to get all my numbers fairly well controlled. I also have a heart murmur.In January 2004, I caught a bad flu and ran a fever for about a week. That was when my current batch of problems started up. After that flu, I started having joint pain my knees and hips, and some numbness in my toes. Since 2003, I've developed a lot of pain in my back, and sometimes in my shoulder and elbow joints, but never in the small joints of my hands or feet. The knees and hips are still the major pain locations.The joint pain comes in three varieties: the sort of joint pain you have when you're running a fever, and your joints ache; a sudden, sharp, stabbing pain that will come out of nowhere and then leave immediately, often happening while there's other joint pain going on; and a severe pain that I can only describe as the feeling immediately after you fall down on concrete, only without the adrenalin rush and lasting for hours and hours.The pain is usually worse later in the day, though I'm often very stiff, usually without pain, in the morning. Sitting for too long (on a plane, for instance) is very painful, and makes it difficult to walk afterwards. Too much walking or exercise will make my joints hurt too. The only exercise I can manage is 20 minutes of swimming or very light pilates, or 20 minutes of walking if my joints aren't already in pain. There is extreme fatigue that goes along with the pain, and I often feel very cold (for instance, it's 76 degrees inside right now, my temperature is 98.5, but I'm wearing thermals, two pairs of socks, slippers, a sweatshirt, a hat, and I'm wrapped in a blanket).As I'm coming to the end of my third year with this, I've found some patterns. My health is the best during the summer. Summer 2003 and 2004 I had almost no symptoms at all. Summer 2005 I had June and July without any symptoms. This summer there was a gradual lessening of my symptoms through June, July, and August. I only had to take pain medication once every two or three days, and the issues of feeling cold went away entirely from May until about two weeks ago. Any sort of infection will set off a flare. If I run a fever, my symptoms will get a lot worse for at least 4 months straight. My doctors won't give me a flu shot, since they don't know what it will do to my immune system. This is my first autumn since this thing started that I have not caught a bad flu or cold, or run a fever over 100 degrees (99.8 or so is pretty common with me, though most of the time my temp is between 98.4 and 98.6), so it's interesting to see how things are going. Instead of a sharp jump in symptoms following a flu, I've instead had a gradual decline starting near the end of August. I'm back up to pain medication every single day, sometimes twice or three times a day. I was working full time through the end of September (I work from home for my father, so he is flexible with my hours), but over the past month I've been able to put in less and less time every day.I am currently on prescription pain medication which I can take up to three times a day, and a prescription muscle relaxant that I take right before bed to help me sleep through the night without being in too much pain to sleep. I'm also on a prescription for my stomach, since the pain med makes me nauseous and I was losing weight on it. I'm on thyroid medication for the Hashimoto's, and birth control since my doctors have made it quite a point that I "should not attempt an unsupervised pregnancy", in their words.Last May I also broke down and bought a cane. I usually only need it when I know I will be walking a lot, at airports (the sitting does quite a number on me), and sometimes in the evenings when the pain is really bad. Still, I'm 25 years old and I need a cane to walk. :(I have gone through more doctors than I can count at the moment, but so far no diagnosis. The doctors have ruled out MS and Rheumatoid arthritis, and think Lupus is unlikely since I haven't had any skin issues. I have had MRIs of my brain, an x-ray of my spine, an EMG, EKG, and EEG, and more blood tests than I can name. With the exception of my thyroid antibodies, which are still off the chart, everything has come back normal -- including my white count at the same time that my thyroid antibodies were off the chart, which I thought was odd. If my thyroid antibodies are that high, shouldn't my white count be elevated too?I have had trigger point injections, which hurt like ***l and didn't help at all, and 8 months later I still have a sunken and painful spot about the size of a quarter on my hip where one of the injections went. Pain meds thus far have been pretty good at keeping things under control (though not pain-free), and I had a week dose of steroids last February that helped lessen my symptoms for a few weeks. During the summer I swam every other day and that seemed to help. Now that it's too cold to swim, I try to do a ballet-type warm up and stretching at least every other day, but often I'm too tired or in too much pain to be able to do it. When I do manage to, I can usually go a few extra hours without pain meds the next day, but that's the only difference I've noticed. I've gotten to a point where I can manage the symptoms, but what I want now is a diagnosis. I want to know what this thing is, so I can know what to expect in the future. I've had a few unscrupulous doctors try to pawn off bad diagnoses on me. The first was peripheral neuropathy, which I believed for a long time until a new doctor did the EMG and disproved that. The second was Fibromyalgia, which I don't fit the diagnostic criteria for. At this point, I'm only interested in a diagnosis that has test results to back it up and that matches my symptoms. So, if anyone actually made it this far, what I'm looking for are suggestions of other diseases that I should look into. I have a fairly good set of doctors right now that are willing to test for anything that sounds like a match with my symptoms (the last one was Ankylosing Spondylitis, which the x-ray more or less ruled out), but they themselves are out of ideas on what to test for. So if any of this sounds familiar to anyone, please, please let me know. At this rate of decline I figure I am going to need a permanent handicap parking permit by the time I'm 30. I've also given up on the idea of having children. Thanks in advance,Ryot
    Anonymous 42789 Replies
    • December 5, 2006
    • 02:12 PM
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  • Hey again Acuann. Sorry if I came off a bit harsh yesterday -- I posted when I wasn't feeling very well, probably not the best idea. I've had more than a few doctors who want to just shrug and say "oh well, let's just treat your pain instead of trying to diagnose this progressive illness," so I tend to get a bit frustrated when anyone suggests that I should stop pushing for a diagnosis. But you are right, looking into complimentary medicine is a good idea, and one I have just started exploring. My mom has recommended chiropractic to me, and my rheumatologist thought that or acupuncture might help. I need to see what my insurance covers, if anything, before I start investigating anything specific. Along with what we were talking about earlier -- pacing yourself in response to your illness -- I have to pick and choose what things I spend time and effort on. I'm trying to work as much as I can, prepare for the holidays, all that sort of thing, as well as continue to investigate possible causes for my illness, stay on top of my treatment and testing, etc. I could spend all day every day investigating conditions and reading up on treatments, but I have to ration my time and energy.But you are right, and I do need to be looking into other forms of treatment. Thanks again for your posts, and I'm sorry I snapped at you.~Ryot
    Anonymous 42789 Replies
    • December 5, 2006
    • 11:55 PM
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