Discussions By Condition: I cannot get a diagnosis.

from tendinitis to arthritis to sleep disorder..?

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: chaosconnect
  • July 9, 2008
  • 09:50 AM

I am currently a university student. In December, 2006 I noticed that I was having wrist pain. Being a farm kid, I attributed it to some unknown injury and ignored it. By March of the following year, the pain had not abated. In fact, it got so severe that I went to see a doctor at a walk-in clinic. He informed me that I had tendentious and should take ibuprofen until it healed. So I did.

Unfortunately, it didn't heal. So I went to see another doctor. He ran a bunch of blood tests, discovered my esr was through the roof (esr is how fast your blood separates into white blood and everything else, mine was moving too fast). So he hummed and hawed and gave me a tentative diagnosis of seronegative rheumatoid arthritis. That was last september.
By this time the joint pain had moved to include my ankles. By January I was feeling fatigued, my knees and shoulders were also being impacted, and my wrists had worsened to the point where I lost my ability to handwrite.

Now I saw another doctor, a rheumatoid specialist, and he tells me that I don't have rheumatoid arthritis but instead I have a sleep disorder. (That was ~a week ago)

His theory is I hurt myself, which prevented my body from hitting lvl 4 sleep (aka delta sleep). This is the important stage that resets you and makes you ready to get up in the morning. Then, because I was missing this stage, my esr built up, which caused my joints to hurt. My muscles didn't start reseting themselves, so they are also a little tender. So my prescription is soft music, meditation, and light exercise.

Now this sounds like a happy ending, but there are a few factors that have me head banging.

1. I figure that if I had a sleep disorder for that long (1 1/2 yrs.) it would have had a severe impact on my ability to concentrate, aka my grades, which didn't drop. In fact they got a little better...

2. If I am missing the stage he thinks I'm missing, it is pretty much the equivalent of napping instead of sleeping. Now if I was napping was my primary form of sleep for over a year, I think I'd have some pretty noticeable psychological backlash. Yet I haven't. My moods are stable, my emotions are stable, yes I've had a few bouts of anxiety, but chronic pain takes the blame for that. My 5 senses aren't playing any tricks on me, and though my energy levels are lower, I am still alert and able to file things into my long term memory. And I haven't had any psychotic episodes and bitten anybody.

3. It is possible that the sleep disorder is something new that was caused by my *mysterious pain* or by the steroids my 2nd doctor put me on. So it could be a secondary cause (don't get me wrong, I'm rooting for primary, but you can understand why I am a little hesitant to immediately believe)

So I'll try the music and the relaxation, give 2 months and if it doesn't get any better I'm gonna riot. It'll be great. I'll keep you updated

But in the meantime has anyone ever heard of anything like this? Does anyone have any more information or similar experience?

Note- my current symptoms are
joint pain-wrists, shoulders and ankles, all symmetrical
joint stiffness
high esr (blood sedimentation rate)
"popping" of the affected joints (I sound like Rice Krispies)
fatigue(easing off since I started listening to soft music)


symptoms I don't have
bone damage (x-rays are clean)
psoriasis
syphilis<-tested for both
redness
swelling
rash etc.

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19 Replies:

  • Wow, from wrist pain to sleep disorder? I guess it is possible but like you I am left scratching my head! It is possible you are dealing with more than one thing with one NOT being related to the other. Let's deal with the wrist pain and joint pain first. My first guess was rheumatoid arthritis as you been test for...and it still could be this and you may be a case where if the blood work is just a bit high or a bit out of normal range you get symptoms....it is possible.....this disease, of course, suggests your problem may be autoimmune. Now add in the fatigue and I am leaning even more towards some sort of autoimmune disease. Ok, here is another suggestion that I have had personal experience with and that can cause joint pain and fatigue and that is the thryoid. Autoimmune thryoid disease can cause similar symptoms....Hashimotos is a possible guess and you might want to do some thryoid testing. A thryoid even slightly out of the normal ranges for blood can really effect people...I am a case in point....test for FT4, FT3, TSH (0.3-2.5 for normal range on TSH (be careful on this)!!!!) and of couse the antibodies for Hashimotos....there is a related condition called ... fibromyalgia, and you may want to check into this as well...this is REALLY a joint pain autoimmune disease ..... it is often treated with thryoid medications as they are so closely related....look it up. In addition to that I would push for more autoimmune disease testing....it is possible you may have another one.....autoimmune diseases often present with joint pain and fatigue. May want to get a bit more testing. And do continue the music...personally I think it is great that you found this is able to relax and help you WITHOUT drugs! Hope this helps! Joan
    Joan5555 316 Replies Flag this Response
  • I hope i can be of help. 2 months ago the muscle in my upper thigh swelled accompanied with pain and hurt to the touch. Then, knee pain began along with the other knee. Now both wrists are snapping with movement bringing jolts of pain. Toes and feet hurt. Feel like i'm walking on my bones. Thumb swollen and painful, now all other fingers doing the same. Skin hurts. Heavy fatigue. i was bitten by two ticks a month prior to these symptoms. Tests all negative. HOWEVER, if you have been exposed to an area where ticks may be found, please consider. Also, please do your research. Only about 30% of all possible tick related diseases will show up in bloodwork. A good organization to look up on the web is International Lyme And Associated Diseases Society ( i think it's ilads.org) Look up Dr. Joseph Burrascano's Treatment Guidelines. I have been treated with antibiotics for 3 weeks so far and some improvement is evident. You feel worse before you feel better. Lyme and related diseases are tricky. i have been diagnosed clinically by a local M.D. sympathetic to this disease.I had this 10 years ago. It took 2 years before it was found in my urine. With treatment, i got better. Now, i'm doing it again. Lyme mimics so many diseases especially Fibro., Epstein, Lupus, etc...Good Luck All!Please do your research on this.
    colster210 1 Replies Flag this Response
  • So I got a bunch more test results back. Every thing normal. Calcium, potassium, liver function, kidney function, etc. My other doctor thinks the sleep disorder thing as primary cause is malarky because my brain functions, moods etc are fine. Oh, and I don't have Lyme. I can't. Alberta is too cold, rat free and tick free. All the ticks died off in 1988.fibromyalgia is out too, though a great suggestion. It wouldn't explain the high esr unless I do have sero negative RA and have fibromyalgia in conjunction with RA.
    chaosconnect 15 Replies Flag this Response
  • I would concur with the replies you already have here. Testing the thyroid TSH level is a good place to start. 15 years ago my knees and shoulders progressively became more sore and it became hard to go down stairs. Along with this sympton was a high pulse rate, losing weight and general muscle weakness. I began to eat 4 meals a day and still lost weight.I went to the doctor and they did a blood test on the thyroid and long story short is they diagnosed me with Graves Disease (automimmue disease for out of control high thyroid). They had to destroy my thryroid and now I take a supplement (Synthroid) and the last 15 years have been great, except lately which I will explain below. So, get the thryoid levels tested and as a supplemental program there are diets to help the body keep inflamation down.Maybe you can help me:What caught me eye on your note is that I am currently experiencing pain in both knees on the inside and the upper inside portion of my elbows. The symptoms are like tendonitis but the doctors are now starting to scratch their heads - I have been tested for sed rate, Lupus, MS and Rheumatoid arthritis all of which come back negative. What puzzzles them all is the symetrical situation. I am 46 and have been physical all my life but arthritis does not just come on in all 4 joints symetrically this way. I suspect an autoimmue issue but am grasping at straws now just as the doctors are. Any of this sounds familiar or any suggestions from your search?Thanks
    Anonymous 42789 Replies Flag this Response
  • to waywest-symetrical pain/tenderness in joints points to fibromyalgia
    Anonymous 42789 Replies Flag this Response
  • I would concur with the replies you already have here. Testing the thyroid TSH level is a good place to start. 15 years ago my knees and shoulders progressively became more sore and it became hard to go down stairs. Along with this symptom was a high pulse rate, losing weight and general muscle weakness. I began to eat 4 meals a day and still lost weight.I went to the doctor and they did a blood test on the thyroid and long story short is they diagnosed me with Graves Disease (autoimmune disease for out of control high thyroid). They had to destroy my thyroid and now I take a supplement (Synthroid) and the last 15 years have been great, except lately which I will explain below. So, get the thyroid levels tested and as a supplemental program there are diets to help the body keep inflammation down.Maybe you can help me:What caught me eye on your note is that I am currently experiencing pain in both knees on the inside and the upper inside portion of my elbows. The symptoms are like tendonitis but the doctors are now starting to scratch their heads - I have been tested for sed rate, Lupus, MS and Rheumatoid arthritis all of which come back negative. What puzzzles them all is the symetrical situation. I am 46 and have been physical all my life but arthritis does not just come on in all 4 joints symetrically this way. I suspect an autoimmue issue but am grasping at straws now just as the doctors are. Any of this sounds familiar or any suggestions from your search?ThanksIronically you could have a sleep disorder. That would explain the negatives on your tests. Have you looked into fibromyalgia? It affects the body symmetrically. Have your docs check to see if you have any muscle tenderness. You yourself wouldn't notice it. I know I didn't. If it was arthritis your sed rate would be up, so thats out.
    chaosconnect 15 Replies Flag this Response
  • If Lyme and thyroid problems are ruled out, think about being tested for wheat intolerance (celiac disease). This can cause joint pain and is often missed by doctors.
    aquila 1263 Replies Flag this Response
  • :cool:HiYou said you were tested for Syphilis but it is gonnorhea that causes joint pain and R.A. But I bet you were tested for that too. Hope you get better soon
    chrismia 159 Replies Flag this Response
  • Note- my current symptoms arejoint pain-wrists, shoulders and ankles, all symmetricaljoint stiffnesshigh esr (blood sedimentation rate)"popping" of the affected joints (I sound like Rice Krispies)fatigue(easing off since I started listening to soft music)RA does not cause symmetrical joint stiffness/pain. You'd have redness and swelling of your affected areas. I know my husband has it and I get to see it the symptoms when he's got a flare up.Initially, the doctors tested him for Polymyalgia Rheumatica (PMR) because his aunt has it. It causes widespread muscle aching and stiffness in the neck, shoulders, upper arms, thighs and hips. You awaken with the symptoms at their worst and they get better as the day goes on. The tests and the alternating affected joints were the decided factors for diagnosis.There are over 100 types of arthritis, rheumatic diseases and related conditions.
    Anonymous 42789 Replies Flag this Response
  • To chrismia;Its really unlikely that I have an STD (or STI as the kids call them these days) I am not and have never been sexually active. But thanks for the idea. To Dxd;Specifically my doctor diagnosed me with sero negative rheumatoid arthritis. Its supposedly one of the mildest forms and symmetrical pain is a symptom. But I agree that he's probably wrong because that I only have 2 symptoms of the rest needed...Do you husbands joints pop at all? Or crack or make some weird noise of some sort? Do his joints ever feel gritty? I have this thing where if I don't move my wrist for a while it stiffens up and then I move it and a bunch of grit in it cracks then the joint suddenly feels looser. Sound familiar at all?Sorry if I am prying but I don't know anyone with actual arthritis so I can't ask them. And my doctor is incompetant.
    chaosconnect 15 Replies Flag this Response
  • hi , i am a student from chennai (india) ,after reading ur article i found thatiam also suffering from the symptoms u have mentioned ,if u know any cure forthis please give me a guideline :confused: my email id is "pearlking_777@yahoo.co.in"
    pearlking777 1 Replies
    • February 7, 2010
    • 07:00 AM
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  • That's very interesting, but it kind of makes sense. I also have joint pain, very severe in my wrists - so much so that I can't drive or write sometimes. I also have insomnia. I never fall into deep sleep, only shallow light sleep where I toss & turn and wake up constantly. I wonder if there is a correlation between missing a sleep stage and it affecting muscles and joints. So maybe your doctor is right. Maybe you should see a sleep specialist though.
    Anonymous 42789 Replies
    • February 8, 2010
    • 07:02 PM
    • 0
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  • Quite Interesting. Actually Insomnia is caused due to the lack of relaxing. I suffered a lot with the sleeping disorder and then undergone Hypnosis Treatment and got rid of it.
    BaskiSai 1 Replies Flag this Response
  • hi do google ---polymyositis --the doctors dont test for this illness and jet it is a kind of arthritis.
    charmaine petzer 176 Replies Flag this Response
  • :cool:HiYou said you were tested for Syphilis but it is gonnorhea that causes joint pain and R.A. But I bet you were tested for that too. Hope you get better soonthe syphilis test was to support investigation of lupus, an autoimmune disease as sufferers often get a false positive for syphilis
    Anonymous 42789 Replies
    • December 16, 2010
    • 06:09 PM
    • 0
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  • RA does not cause symmetrical joint stiffness/pain. You'd have redness and swelling of your affected areas. I know my husband has it and I get to see it the symptoms when he's got a flare up.Initially, the doctors tested him for Polymyalgia Rheumatica (PMR) because his aunt has it. It causes widespread muscle aching and stiffness in the neck, shoulders, upper arms, thighs and hips. You awaken with the symptoms at their worst and they get better as the day goes on. The tests and the alternating affected joints were the decided factors for diagnosis.There are over 100 types of arthritis, rheumatic diseases and related conditions.Each person suffering from RA has different symptoms, it can start of assymetrical, and then become symmetrical as time goes by. It is more commonly symetrical, and rheumatologists use this as part of their dx criteria
    Anonymous 42789 Replies
    • December 16, 2010
    • 06:13 PM
    • 0
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  • RA does not cause symmetrical joint stiffness/pain. You'd have redness and swelling of your affected areas. I know my husband has it and I get to see it the symptoms when he's got a flare up.Initially, the doctors tested him for Polymyalgia Rheumatica (PMR) because his aunt has it. It causes widespread muscle aching and stiffness in the neck, shoulders, upper arms, thighs and hips. You awaken with the symptoms at their worst and they get better as the day goes on. The tests and the alternating affected joints were the decided factors for diagnosis.There are over 100 types of arthritis, rheumatic diseases and related conditions.RA is generally a symmetrical arthritis, although it may not always start off symmetrical. Generally though it affects the joints on both sides of the body - so if one wrist is affected, so is the other ( may take a few months, but this is how it happens). You can check this out on most sites that describe RA. I have it also, and my mother died of it. The swelling isnt always red either, though quite often it is. Just my two penneth!
    Anonymous 42789 Replies Flag this Response
  • I have almost the same thing going on. The only differences from yours to mine is I did not have a high esr. ( The dr is retesting it because it hasnt been done in two years since symptoms started). Also I have a slightly positive RF (which didnt show up untill 2 years from the beginning of serious symptoms). I was DX with fibromyalgia, then said its RA instead. Seen the Rheumatologist and he said its most likely not and he thinks its just a combo of Fibromyalgia and Tendonitis. It's really causing me a lot of problems. If you found any answers to yours please let me know. I really need this to get better and my doctors have no clue what to do for me.
    Becki1031 1 Replies
    • October 9, 2011
    • 07:05 AM
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  • Thank you for sharing
    Bret98 1 Replies Flag this Response
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