Discussions By Condition: I cannot get a diagnosis.

no ideas... except anxiety?

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: Anonymous
  • April 20, 2008
  • 05:01 PM

Hey all,

This is my first post, as I've been lurking around here for a while.

The past four months have been the worst of my life. Constant achiness all over, electric-type jerks and jolts whenever I try to sleep, stomach upset after nearly every meal, constipation, and ubiquitous headaches. I've had bloodwork done a couple times, EKGs, a headscan. I've spent three months trying to eat better, eliminating caffiene, exercising regularly, and trying anti-depressants and massage. Nothing has helped - everything keeps getting worse. And NO ONE will listen.

All anyone can tell me is that I suffer from anxiety. This is hardly news. Wouldn't the more alarming development be if I had experienced all these things and WASN'T anxious?

I guess I'm just curious if this combination of symptoms sounds familiar to anyone else - and if some kind of latent anxiety could conceivably cause any or all of these things... ?

Desperate in KY,
Josh

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24 Replies:

  • Hi Josh, I have actually been experiencing incredibly similar symptoms to you and have also been diagnosed with anxiety (despite several of the symptoms occuring when I am resting or relaxed). Like you, I feel that anxiety is more of an effect rather than a cause. I posted to this forum last week and several individuals recommended that I look into autoimmune diseases such as thyroid problems and celiac disease. Most autoimmune diseases present in bizarre symptoms affecting multiple body systems. What type of specialists have you seen (neurologist, rheumatologist, etc.)? I wish you the best in your search and I will be sure to post if I find out any more information as well.
    GD2005 61 Replies Flag this Response
  • One other thing...have you been monitoring your temperature? My "normal" temperature in the past (prior to any of my symptoms) had always ranged between 96 - 97 degrees F, and I have noticed that I have been running a low grade fever (99 - 100 degrees) for the past 5 days. It may be something you might want to keep an eye on since either steady low or high body temperatures can signify a problem.
    GD2005 61 Replies Flag this Response
  • Hi GD, So sorry to hear you're in the same spot. The symptoms are maddening enough, it seems, without feeling ignored or written off by physicians. And yet, here we are with this nebulous "anxiety" diagnosis. I haven't seen any specialists yet - just my primary doctor, a psychiatrist, and the doctor who attended to me during my one ER trip (due to major dizziness and head pressure). I'm slated to get an appointment with a neurologist next week. Thyroid occured to me as well, because I have a family history of hypo-thyroidism. So far all blood tests have shown my TSH and T4 to be within what my doctor's office considers "normal range." I'd been secretly wishing it would be nice and elevated so we could begin treating something. For now I'm just stuck in a holding pattern. Psych gave me Cymbalta (tried it for over 2 months and kinda felt worse, so we decided to move off it). Right now I take Trazodone to sleep (it's the only thing that dulls the electrical shock feelings) and Klonopin on my really bad days. Haven't looked into celiac disease. Will have to get more info. Have you have further tests - like MRI or anything? Are your symptoms accompanied by pressure or a wobbly feeling in your head? It seems to be a constant feature for me. If you want to keep in touch, email me at Derridean1@hotmail.com. I'd love to have someone who is battling the same thing to chat with and bounce ideas off of. All the best,Josh
    Anonymous 42,789 Replies Flag this Response
  • If you were a woman I would say menopause....so similar...but you are not :rolleyes:...so here is one thought that has nothing to do with meno but does with the enodcrine system....adrenals...you may be have adrenal surges and that may be labeled as anxiety and could be because of anxiety or "causing" it...so you may also want to get blood work for cortisol (morning, noon and PM...can even do it by salvia tests yourself through online labs) and the other thought is thryroid ....perhaps an autoimmune thryoid problem where your thryiod hormones may be fluctuating....called Hashimotos or Graves disease. Looks these up and see if you may find a match...for adrenals, and thryoid blood work would check it. Joan
    Joan5555 316 Replies Flag this Response
  • Thanks for the ideas Joan. So far my thyroid levels have been normal. I have no idea about cortisol, though I looked up the diseases that accompany high or low levels and they don't seem to match my symptoms very well. Though I have wondered about andrenal exhaustion or something of the sort. Do you know of any other endocrine-related tests one might take? Also, GD - I haven't been checking my temperature, but it has felt like I've been running a low fever for the past few days. I'll start checking that. Thanks for the suggestions. They're much appreciated. This thing is literally ruining my life.
    Anonymous 42,789 Replies Flag this Response
  • Hi Josh,Sorry to hear you're ill. I've seen almost every specialist there is, and know what you're going through. I don't know if any of the information below can help you, but maybe it can save you some time. Out of over 10 specialists I saw, the ones that helped and actually listened to me were a rheumatologist, and naturopathic doctor. The problem that I had going to a different specialist for each symptom was that no one was putting the whole picture together. You might not initially think to see a rheumatologist, since they deal with joints and muscles, and that isn't your main problem. But, they are the doctors that people go to when they can't get a diagnosis. Some are better than others (if they try to give you a fibromyalgia diagnosis in 5 min without running any tests, you might want to go elsewhere), BUT, they look into problems that affect multiple symptoms, like autoimmune disease. Also, seeing a naturopathic doctor doesn't necessarily mean you have to go natural in your approach, etc, but they can help diagnose you and really listen. http://www.naturopathic.org/findannd.php They think outside the box, and can run more exhaustive tests for you that regular MD's won't run. (For example, I had a ton of digestive problems and had to go through specialty out-of-network labs to find out what was wrong with me- these labs caught problems in multiple organs, even when my gastroentrologist told me I was fine: http://www.genovadiagnostics.com/, or http://www.diagnostechs.com/main.htm. Again, most MD's don't use these labs, unless they're open minded) If all your autoimmune tests seem to be fine, things like toxins, allergies, infections(like lyme, candida infections, etc) can affect your whole body and cause all kinds of crazy symptoms. Hope this helps. Good luck with everything!
    Writer53 10 Replies Flag this Response
  • Hey all, This is my first post, as I've been lurking around here for a while. The past four months have been the worst of my life. Constant achiness all over, electric-type jerks and jolts whenever I try to sleep, stomach upset after nearly every meal, constipation, and ubiquitous headaches. I've had bloodwork done a couple times, EKGs, a headscan. I've spent three months trying to eat better, eliminating caffiene, exercising regularly, and trying anti-depressants and massage. Nothing has helped - everything keeps getting worse. And NO ONE will listen. All anyone can tell me is that I suffer from anxiety. This is hardly news. Wouldn't the more alarming development be if I had experienced all these things and WASN'T anxious? I guess I'm just curious if this combination of symptoms sounds familiar to anyone else - and if some kind of latent anxiety could conceivably cause any or all of these things... ? Desperate in KY,Josh It is possible for anxiety to cause all kinds of symptoms. Headaches and tummy upsets are very common with anxiety. My sister had depression and she suffered severe body aches with that. Also one can get things such as restless leg syndrome (i thou get it all over my body) ..with anxiety. Other things of cause could be causing your symptoms too... anxiety and other issues as another said, can be caused by adrenal/cortisol problem. Constipation may cause headaches.... Are you still having problem with constipation when you are eatting a high fibre diet and drinking plenty of water? Sounds like you have a food issue going on? You could have something like celiac disease etc . Food issues can also cause headaches, body pain etc. It may pay to try to work out if you are intollerant to any food eg milk, gluten, nuts etc. Im sensitive to milk, it dont affect my bowels badly but it gives me a headache so I cant have much of it.
    taniaaust1 2,267 Replies Flag this Response
  • You might want to take a look at supplementing w/ magnesium, a vital and necessary mineral that controls 350 enzyme functions including adrenal response, bowel health, immunity etc. You can google "magnesium anxiety" and see countless articles. Any positive dietary change would be helpful in any situation. I wonder if you have had any exposure to toxic chemicals and/or toxic metals (mercury, lead, aluminum, cadmium etc.)? Hair Analysis and a Heavy Metal challenge may be helpful. See this link from the CDC on lead exposure (gastointestinal issues, joint pains and anxiety)
    LINENUP 122 Replies Flag this Response
  • I am wondering if it may be related to a shingles like disease. I believe you can have shingles without the break out and that creates a lot of grief and makes it very difficult to diagnose those electric nerve pains.
    Monsterlove 2,921 Replies Flag this Response
  • My thyroid tests have all been normal as well and a couple of readers have recommended getting a thyroid antibody test done (which I still need to do). Apparently, it is possible to have a thyroid problem while still maintaining normal hormone levels, but most docs don't do the antibody test unless the TSH test is irregular.Also, in general, if you have a family history of some autoimmune diseases I would recommend mentioning that to your doctor. I know several autoimmune diseases are rarer in men, so they may overlook testing for them initially.I do get the occasional pressure and wobbly feeling in my head, but I have been fortunate to not have the aches and pains like you. I'm curious to hear what you find out from your neurologist. I have had several neurological tests done (head MRI, head CT, EEG, Wilson's disease test, neuroacanthocytosis, lupus, lyme, etc.) so they've ruled out most neurological origins for me. My neurological symptoms were the most obvious which is why I was referred to the neurologists initially, but now that I know that is not a concern, I am looking into other potential causes since there are several conditions that can have neurological symptoms but not be neurologically-based. Just out of curiosity, did your symptoms come on gradually or suddenly?
    GD2005 61 Replies Flag this Response
  • A couple things worth looking into are celiac disease and Hashimoto's Encephalopathy. Both can produce weird neuro symptoms. HE is a rare complication of autoimmune thyroiditis. It's diagnosed by checking thyroid ANTIBODIES- many patients have normal hormone levels and so it is missed. I went undiagnosed for 8 years and was told the whole time that my thyroid gland was healthy... and was referred out to a variety of shrinks, which was quite damaging.I have a feeling that HE is not all that rare- it is just not known about right now, and so is not even considered when people come into the doctor with various symptoms which could be mile cases of HE. Given the prevalence of thyroiditis in the population, I suspect that there are more cases of HE out there and that these patients are being labeled psychosomatic/anxiety/depressed.There are other things you could have. I'm glad to hear you are going to see a neurologist. Hopefully they will look into all possibilities and be able to pin down an answer for you so you can get better.Best wishes
    Anonymous 42,789 Replies Flag this Response
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  • Thanks for the suggestions, guys. GD, to answer your question, most of the symptoms I now have came on slowly. Initially back in January I had chest/left arm pain. Naturally fearing heart problems, I got myself fairly worked up and stayed up nights worrying. I finally went to a doctor and had a series of heart tests run - all normal. Since that time, the symptoms have just been mounting and mounting. Despite months of anti-depressants, pain meds, positive thinking, exercise, and other natural methods, I continue to feel sick every day - abdominal pain, constipation on and off, head tremors, insomnia, and achiness. I took your advice and started taking my temp every day. So far I've been running about a degree above normal (98.6) every day - not quite a fever, though it feels like it.As for thyroid, I can't seem to get anyone to test beyond the basics because my levels have been normal thus far. Thanks again for all your help.
    Anonymous 42,789 Replies Flag this Response
  • I always questions "NORMAL" thryoid results...I have heard this many a time from a doctor and the doctor and lab are using outdated TSH ranges. ....this is why so many suffer for so long....just be sure you check out your lab results with a repuitable online message board....Mary Shomon's thryoid site is pretty good...helped me a lot! Just trying to help...Joan
    Joan5555 316 Replies Flag this Response
  • Joan-Two years ago my TSH was 4.82. Earlier this year it was 3.33 I believe. Is this above the range you would consider "normal"? It seems impossible to get a doctor to listen to you unless it's outside .5 - 5.0.Josh
    Anonymous 42,789 Replies Flag this Response
  • Certainly two years ago that was high. Not as high now but the fact that it seems to be fluctuating is a sign you MAY have something going on there. Certainly the symptoms you listed do fit a thryoid condition....AND THE FACT YOU HAVE A FAMILY HISTORY>>>>> According to the the American Association of Clinical Endocrinologist (the thyroid and diabetes doctors) the upper range of TSH is 2.5- 3.0...though I have to say it is very, very individualistic and some people feel good at 3.0 and other definitely would not.... I have seen that TSH of 5.0 as the upper range of "normal"...that is way too high....I have not heard of anyone feeling good with a TSH of 5.0! You should also get tested for Hashimotos disease (very common) an autoimmune disease of the thryoid that causes hypothyroid (what you may have). It is not as common among men, but not UNCOMMON either! That may be why your doctor is not pursuing more testing...but it is only blood and perhaps a ultrasound of the thryoid so....easy right? ;) If you have not done so, you need to see an endocrinologist who is aware of the latest (and they are not THAT new) TSH ranges and get more thorough testing. PLEASE go to Mary Shomon's site...it is really well worth it and research thryoid conditions more and even post your results on the message boards there. Thyroid hormones effect EVERY CELL in your body. Good luck, Joan
    Joan5555 316 Replies Flag this Response
  • Well, symptoms seem to be getting worse and I'm really getting scared. I've been running a low fever for four or five days now, stomach/intestinal pain wakes me up every day, and no OTC pain relievers seem to do anything. I need to find a new GP because my current one is dumping all this on anxiety. Any ideas for other things to check? Can I walk into a doctor's office and just ask for these things? I'm running out of options. Thanks for listening, you guys. This has been one of the few boards that responded.
    Anonymous 42,789 Replies Flag this Response
  • I think it's smart to look for a new GP if your current one isn't listening. Especially if you are running a fever, from everything I have heard from physicians, anxiety cannot cause fevers. If you do find a new one, I would just recommend that you stress to them that you realize you are suffering from some anxiety (who isn't that isn't feeling well?), but that the anxiety did not come on until after your other symptoms started. You could even mention that you understand that anxiety can cause several physiological symptoms, but you just want to rule out ever other potential cause first (which I think is completely logical). I know all of my symptoms have caused me to be frustrated and emotional at times, leading me to burst into tears in the doctor's office which tends to aid in their anxiety diagnosis...:o (I'll need to work on that...) Just to update you, since we were having similar symptoms, I've been running a low-grade fever since mid-April. I just went in for more blood work and a thyroid ultrasound. I'll let you know if I find out anything of significance. Best of luck.
    GD2005 61 Replies Flag this Response
  • Well, symptoms seem to be getting worse and I'm really getting scared. I've been running a low fever for four or five days now, stomach/intestinal pain wakes me up every day, and no OTC pain relievers seem to do anything. . I feel so bad about adding more to this whole thread. But you mention about the stomach/intestinal pain with a fever. Did we discuss the possibility of a pathogenic organism (GI) creating this havoc. Specifically parasites? When I came down w/ my parasite problem, I had multiple problems show up especially anxiety -it was horrible. Sleep difficulties, muscle and joint weakness, confusion or brain fog , sweating etc. etc. I go probably go on for a few more sentences. And I would add that a parasite infection will cause major disruptions in the endocrine arenas. Any abdominal bloating, belching, painful bm's, blood in the stool, diarreha, constipation? Do you eat any sushi or uncooked or undercooked meats? Swim in any lake? Drink water that may not have been sterile? Travel outside the US? As mentioned in a previous post about environmental poisoning specifically lead poisoning. Here is the link http://www.nlm.nih.gov/medlineplus/ency/article/002473.htm signs of lead poisoning ::: irritability, abdominal pain, headaches, difficulty sleeping etc. New home, new furniture, new place of work? Anyone else sick? Caused by leaching chemicals (sick house syndrome). Drinking water could be a source of environmental toxins (well water). Exposure to any pesticides such as rat poisons etc. And of course there are many other sources of poisoning that can exist like mercury, arsenic etc. Some of the alternative doctors use a Volls machine that can feedback certain patterns useful for diagnosing. http://www.wholisticresearch.com/info/artshow.php3?artid=81 I have had this test done many times, I can be useful and is controversial. However if you find the right tester, I think some clues could be drawn. But some reason I keep thinking that you are poisoned with something. Maybe I am wrong -
    LINENUP 122 Replies Flag this Response
  • Sorry to keep bumping. Got my MRI results today and they were normal. Sleep study coming up this week or next. Body aches continue, along with vague abdominal pain, headaches, and the wobbly feeling. Tried a Flexeril tonight. Started out great and then I felt like a zombie. Anyone else had any luck with muscle pain meds? Thanks for all your input, guys.
    Anonymous 42,789 Replies Flag this Response
  • did you follow up on the thryoid? Don't underestimate the POWER of this tiny gland....it EFFECTS every cell in your BODY....it can make you feel awful, awful and awful...do follow up on what I recommended in the previous post on this thread....do did have a high TSH at one point....!!!!Joan
    Joan5555 316 Replies Flag this Response
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