Discussions By Condition: I cannot get a diagnosis.

Unexplained, persistent, 24/7 wide-spread joint pain

Posted In: I cannot get a diagnosis. 36 Replies
  • Posted By: GregasGP
  • October 6, 2008
  • 01:44 PM

Hi all,

To say I am desperate is an understatement. I'm looking for some advice and possible treatment options here.

Here's a little bit of history. I'm a 25 year old male and have always been physically active and fit. Never had any joint or muscle issues in the past until last September 2007 when I began having ankle pain, both ankles affected. I have been training for the Royal Air Force and was accepted in January 2008 to begin Officer Training in the Regiment - sadly that's all been shot down with my pain and unexplained condition and my dream is destroyed.

I sparined my ankles back in 2006, moderate sprains playing sport, but all seemed to heal OK. Then unexpectedly pain began in both, mild at first and only when resting not when playing sport etc. It gradually got worse and then in Jan 2008 I had to have an MRI scan. It showed some diffuse thickening of ligaments consistent with chronic ankle sprains, but no other pathology. Gave physio and prolotherapy injections a shot, seemed great for the ligaments and no tenderness there but still constant pain.

Finally opted for surgery in April 2008 where I underwent an ankle arthroscopy on left ankle. The surgeon found a small cartilage tear, still intact membrane, and performed a microfracture procedure. Was on cructhes for 4 weeks as minor damage and followed rehab to a tee. Fast forward to July and scan shows all is healed but still in constant pain.

IN JUNE, things took a turn for the worse. I woke up overnight with upper body joint pain that has progressed to all my joints. Now I have constant 24/7 pain in my wrists, ankles, knees, elbows, thumbs, index fingers, back and hips. It never ceases and is there on a daily basis. There is no swelling or redness or warmth, but a lot of pain and stiffness and creptitis in my joints. It never relinquishes and no meds seem to help. I have been to see various specialists and haven't a clue what to do.

SUMMARY OF SYMPTOMS:
Chronic pain in all joints for the last 4 months
Pain often migrates, worse in ankle joints one day and then ok and worse in knees the next. Differing pattern of pain.
NO swelling/redness/warmth/sensitivity to touch
Persistent pain and stiffness with crepitis too
No associated IBS/sickness etc

TESTS:
Two blood tests - ESR/CRP/ANA/RA/Serum calcium levels all completely normal.
MRI scans - Knees show mild case of chondromalcia Patellae but very mild and wouldn't cause constant pain. Ankles are apparently in perfect condition. No other damage in joints/arthritis
Isotope Bone Scan - perfect with normal tracer throughout and no hotspots.
Physical examinations - By physiotherapist, rheumatologist, chiropractor, podiatrist, ortheopedic surgeon, GP and pain management specialist. No ideas to to cause of unexplained pain. Physical examinations normal. No trigger points for Fibromyalgia etc.

TREATMENTS:
Diclofenac - No joy. All other NSAIDs have the same nil effect
Anti-depressents - Dosulepin and Amitriptyline. No joy with these either
Codeine/Co-Dydramol/Paracetamol - No relief at all
Physio/Various supplements - Glucosomine/HA/chondrotin etc and anti-inflammatory supplements with no success
Biomagnetic therapy and LED therapy No effect either
Prolotherapy injections - no pain relief but has repaired my ligaments very well in sprained ankle

I met with the pain management specialist who suggested I look into BuTrans patches and an anti-convulsant med like Pregabalin. Is this is a good idea?

Any ideas on diagnosis of this dehabilitating condition/ I'm finding at the age of 25 that my life is falling apart, I feel worried about the future, depressed and in all honesty quite suicidal at times.

Hoping you can help.

Thanks all

Greg

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36 Replies:

  • I feel your pain! I am only 17 years old and have very similar symptoms. It seems I just woke up one morning with chronic, unexplainable joint pain. It started in my knees, migrated around my body and now is permanently in every joint. It's been this way for 7 months now. The pain can be absolutely excruciating, but there is no swelling or redness and all blood tests are normal. Every joint in my body cracks and squeaks (it sounds like windex on a mirror). Recently I've developed more strange pains. When I bump into something the pain is extremely magnified. If someone pokes me with their finger the pain radiates all the way to my bone. I've also developed a problem when I make a sudden movement (usually stretching) the muscle I stretch will suddenly feel like a tore it. The pain is intense, but it goes away in less than 5 minutes. The doctor's have all but give up on me. I take muscle relaxers, and that allows me to function on an every day basis but not without considerable pain.Please let me know if you ever find a cure! My e-mail is laineylove37@gmail.com. Keep pushing through. I know it's tough, but this is the only life we've got and it's worth living!
    laineylove37 6 Replies
    • October 7, 2008
    • 01:25 AM
    • 0
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  • Just some amateur comments:For more than ten years, I have suffered joint and muscle pain and severe muscle weakness. All medical tests were negative.I then found that my pain was related to whatever part of my body had been more in use and then I found that eating more and more often than other folk was a satisfactory preventative measure. Depending on how large and how late my evening dinner is, I will get up any time between 1 a.m. and 6 a.m. for my first breakfast and then go back to bed, having a second breakfast when I get up for the day. I have problems if lunch isn't soon after 12 noon. Depending on activity, I might then get through to dinner without a snack, but, if, say I am climbing mountains, I need food every 3 hours or so. Even explaining this 'solution' to the doctors has not prompted them to identify an investigative strategy to pin-point the actual cause of my problems.
    Mountain Goat 13 Replies
    • October 7, 2008
    • 09:58 AM
    • 0
    Flag this Response
  • MountainGoat - have you ever been tested for hyperthyroidism? Your need to eat often as well as the pain points to that.
    laineylove37 6 Replies
    • October 7, 2008
    • 03:05 PM
    • 0
    Flag this Response
  • I have similar symptoms to you, and I'm only 17. I used to be a dancer.. so much for that! It all started 7 months ago when my knees began to hurt. At first I thought it was patella femoral syndrome, but then the pain began to migrate to other joints. Within a few week every joint in my body was in constant pain. The pain is worsened by rain, cold, activity and (here's the real catcher) inactivity. I never had any swelling or redness. The doctor's tested me for everything from Lyme to Lupus all to no avail. Recently I've developed some new, disconcerting symptoms. When I bump into things even slightly the pain is way out of proportion. For example: the other day I pushed in my chair at school with the tops of my knees (something I've done my entire life) and all the sudden a red hot pain seeped into my skin all the way down to the bone. I could barely walk the pain was so intense. When I looked, the place where I pushed in the chair was red, but the redness soon disappeared along with the pain. This happens every time I bump into something or someone pokes me. Another new symptom just started a few weeks ago. The first time it happened I was reaching to scratch my back. All the sudden the muscle (or something) on the top of my shoulder felt like it had ripped off. I can't exactly describe the pain. It's very intense and feels something like a rip or a cramp, I can't tell. This happens almost every time i contort my body in a strange position or stretch (like in the morning). I am unsure if this could have any relation, but I've had a heat intolerance since birth. Sometimes I get very red in direct sunlight (not a sunburn). When I go from a cool place to a warm place my entire body will feel like needles are poking me all over. The needles happen when I exercise or when I'm in a hot stuffy environment. I was diagnosed with dermatographism, but I don't know if that's a correct diagnosis.A rheumatologist gave me muscle relaxers, and they are a life saver! You should ask your doctor about trying them. They don't make the symptoms but the lessen the pain to a point where I can function on an every day basis. They will make you want to live again. Best of luck and be strong!
    laineylove37 6 Replies
    • October 7, 2008
    • 03:20 PM
    • 0
    Flag this Response
  • Have you been tested for celiac disease? Also, ankylosing spondylitiis? Reiter syndrome? Behcet syndrome?
    aquila 1263 Replies
    • October 7, 2008
    • 07:25 PM
    • 0
    Flag this Response
  • I'm with you (21, trained previously for Navy special forces ideas)...elbow injury and then joint pain everywhere 3 months before elbow surgery). I've been dealing with this for about a year and a half....Tryed everything from MAYO CLINIC to Herbal Dr and RAW foods diet. Nothing is helping, Popping and cracking my joints is my only relief. I saw my 6th doctors last week, he was Mayo, cleaveland clinic etc backed, told me it was in my head as i cracked and popped all my painful joints. This is very very difficult, no one understands and this is hurting relationships. Any ideas please let me know!
    nightstalker5.0 2 Replies
    • October 8, 2008
    • 00:27 AM
    • 0
    Flag this Response
  • Sorry I posted practically the same thing twice, I thought the first one didn't go through.I've been tested for Celiac and AK. I don't have the symptoms for Reiter or Bechet's, but thanks for the suggestions!
    laineylove37 6 Replies
    • October 8, 2008
    • 02:54 AM
    • 0
    Flag this Response
  • Hello,There are other tick born diseases, besides Lyme, called co-infections. They are not found with a Lyme test. Unless testing was done by Igenex labs, most tests are neg for Lyme.If you have less than 5 positive bands on a Lyme test, you will be told your test is CDC NEGATIVE....This is WRONG!! Many drs, intead of using the CDC's info as a guide are using it as the standard. The CDC { Center for Disease Control} has 10 band numbers for Lyme, and suggested a test was positive with 5 out of 10 of these markers/bands.Part of the Lyme dx is also based on symptoms. Many of us who have been wrongly dx'd with other things, have been suffering from from Lyme or other tick infections. I started with "migrating joint pain" as did many others. Other bacteria and /or viruses can cause alot of problems, that can be helped with antibiotics. Science is showing the connection between hidden infections and arthritis, lupus, MS, Alzheimers and much more. But you will need to research it yourselves, there is alot . You can find info on this at www.roadback.org and www.lymenet.org . Here are more articles http://forums.wrongdiagnosis.com/showthread.php?t=197104,576 People With No Diagnosis On This Site Alone Best Wishes~~JerseyLymie
    Anonymous 42789 Replies
    • October 8, 2008
    • 09:24 AM
    • 0
    Flag this Response
  • I'm with you (21, trained previously for Navy special forces)...elbow injury and then joint pain everywhere 3 months before elbow surgery). I've been dealing with this for about a year and a half....Tryed everything from MAYO CLINIC to Herbal Dr and RAW foods diet. Nothing is helping, Popping and cracking my joints is my only relief. I saw my 6th doctor last week, he was Mayo, cleaveland clinic etc backed, told me it was in my head as i cracked and popped all my painful joints. This is very very difficult, no one understands and this is hurting relationships. Any ideas please let me know!
    nightstalker5.0 2 Replies
    • October 8, 2008
    • 04:03 PM
    • 0
    Flag this Response
  • Hi all, To say I am desperate is an understatement. I'm looking for some advice and possible treatment options here. Here's a little bit of history. I'm a 25 year old male and have always been physically active and fit. Never had any joint or muscle issues in the past until last September 2007 when I began having ankle pain, both ankles affected. I have been training for the Royal Air Force and was accepted in January 2008 to begin Officer Training in the Regiment - sadly that's all been shot down with my pain and unexplained condition and my dream is destroyed. I sparined my ankles back in 2006, moderate sprains playing sport, but all seemed to heal OK. Then unexpectedly pain began in both, mild at first and only when resting not when playing sport etc. It gradually got worse and then in Jan 2008 I had to have an MRI scan. It showed some diffuse thickening of ligaments consistent with chronic ankle sprains, but no other pathology. Gave physio and prolotherapy injections a shot, seemed great for the ligaments and no tenderness there but still constant pain. Finally opted for surgery in April 2008 where I underwent an ankle arthroscopy on left ankle. The surgeon found a small cartilage tear, still intact membrane, and performed a microfracture procedure. Was on cructhes for 4 weeks as minor damage and followed rehab to a tee. Fast forward to July and scan shows all is healed but still in constant pain. IN JUNE, things took a turn for the worse. I woke up overnight with upper body joint pain that has progressed to all my joints. Now I have constant 24/7 pain in my wrists, ankles, knees, elbows, thumbs, index fingers, back and hips. It never ceases and is there on a daily basis. There is no swelling or redness or warmth, but a lot of pain and stiffness and creptitis in my joints. It never relinquishes and no meds seem to help. I have been to see various specialists and haven't a clue what to do. SUMMARY OF SYMPTOMS:Chronic pain in all joints for the last 4 monthsPain often migrates, worse in ankle joints one day and then ok and worse in knees the next. Differing pattern of pain.NO swelling/redness/warmth/sensitivity to touchPersistent pain and stiffness with crepitis tooNo associated IBS/sickness etc TESTS:Two blood tests - ESR/CRP/ANA/RA/Serum calcium levels all completely normal.MRI scans - Knees show mild case of chondromalcia Patellae but very mild and wouldn't cause constant pain. Ankles are apparently in perfect condition. No other damage in joints/arthritisIsotope Bone Scan - perfect with normal tracer throughout and no hotspots.Physical examinations - By physiotherapist, rheumatologist, chiropractor, podiatrist, ortheopedic surgeon, GP and pain management specialist. No ideas to to cause of unexplained pain. Physical examinations normal. No trigger points for Fibromyalgia etc. TREATMENTS:Diclofenac - No joy. All other NSAIDs have the same nil effectAnti-depressents - Dosulepin and Amitriptyline. No joy with these either Codeine/Co-Dydramol/Paracetamol - No relief at allPhysio/Various supplements - Glucosomine/HA/chondrotin etc and anti-inflammatory supplements with no successBiomagnetic therapy and LED therapy No effect eitherProlotherapy injections - no pain relief but has repaired my ligaments very well in sprained ankle I met with the pain management specialist who suggested I look into BuTrans patches and an anti-convulsant med like Pregabalin. Is this is a good idea? Any ideas on diagnosis of this dehabilitating condition/ I'm finding at the age of 25 that my life is falling apart, I feel worried about the future, depressed and in all honesty quite suicidal at times. Hoping you can help. Thanks all Greg Hello, I have had very similar symptoms as well. I was also very active before this happened and had planned to run the Chicago marathon this year, but won't be able to do that now. It kills me to be so sedentary right now as just as of this past summer I use to run 30 miles per week on a regular basis, swim, bike, and strength train. Now just walking my dogs takes motivation. My problems all started with achilles tendonitis and shin splints in July after I did a race, which was strange considering I have been running for 2 years and never had those problems. I recovered from those in about 1.5 weeks and then resumed my marathon training only to be sidelined once again by hip bursitis and knee pain from a tight IT band. During this time I helped somebody move and severly injured my back (muscle strain, bulging disc). Thankfully, both the back and hip feel almost back to normal now. Anyway, at the beginning of September an Orthopeadic surgeon put me on medrol dose pack (steroids) to help with the inflammation in my back and two days later I developed chest pains and went to urgent care. They did an EKG on me and said since it was abnormal I should go to the hospital. At the hospital they could not figure out what was wrong with and so they brought a Cardiologist in and he discovered I had Pericarditis (inflammation around the heart) which is either caused by a virus or an autoimmune disease. So they kept me overnight, gave me some Nsaids and ran every conceivable test possible and all were normal except for a slightly high white count, which is consistent with infection or virus. The next day I went home and continued to take the steroids and Nsaids. My chest pains were almost gone, but I was completely exhausted and my lower and upper back hurt a lot. Two days later I woke up with terrible shooting and stabbing joint pains and burning feeling all over my body. I went back to the hospital twice within the week and the second time they kept me two nights to run further tests on me and have me see a Rheumatologist. All test run by the hospital and the Rheumatologist were completely normal. I have actually seen three Rheumatologists since who have all concurred I do not in fact have an Autoimmune disease, but that I do have one nasty little VIRUS. I finally went and saw an Infectious Disease doctor who told me that I have the Coxsackie virus, which can cause all the problems I have. She stated that adults can have symptoms from the virus anywhere from 2 months up to 6 months. I have been sick with it for almost 5 weeks, but am now starting to feel a little better, although I think I have been sick with it even longer because I remember having swollen glands a month before I got really sick. My theory is that the steroids I was put on suppressed my immune system, because they can do that, and made my body very vunerable to the virus I already had. I still have aches and pains, but they are a lot less severe then when I first got sick. Have you been tested for any viruses or Lyme disease?
    Anonymous 42789 Replies
    • October 8, 2008
    • 04:17 PM
    • 0
    Flag this Response
  • Great idea ... Check out Viruses and Lyme and other tick borne illnesses. If you have been to so many doctors already, I would head straight to a LLMD they will can testing for viruses also. A Lyme Literate Medical Doctor will send your blood to a specialty lab. As you can tell, general labs haven't shown any answers to why you are having such terrible pain and symptoms. Reseach Lyme Disease on the internet. You may be surprised how similar your symptoms are to those who have Lyme. Steroids can certain cause immune system problems or just open up a window for something you had already, but were fighting off well.
    Anonymous 42789 Replies
    • October 9, 2008
    • 00:51 AM
    • 0
    Flag this Response
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  • While in the service were you vaccinated with the Lyme vaccine? It has been pulled because it caused terrible Lyme symptoms.
    Anonymous 42789 Replies
    • October 9, 2008
    • 00:53 AM
    • 0
    Flag this Response
  • Thanks for the tip off on Lyme. My granddaddy died from Lyme. I'm terrified of it, so I'll definitely bring it up to my doctor. One thing I didn't mention before is that about a month before my symptoms started I took a birth control shot called Depo-Provera. It caused me to have a period for a month straight (until I went on the pill to make it stop), and there is a small dent that's somewhat painful to the touch where I got the shot. However, I cannot find anyone who has taken the shot and subsequently had symptoms like mine. Could an adverse reaction to the shot have caused everything?
    laineylove37 6 Replies
    • October 9, 2008
    • 01:22 AM
    • 0
    Flag this Response
  • Hi all, To say I am desperate is an understatement. I'm looking for some advice and possible treatment options here. Here's a little bit of history. I'm a 25 year old male and have always been physically active and fit. Never had any joint or muscle issues in the past until last September 2007 when I began having ankle pain, both ankles affected. I have been training for the Royal Air Force and was accepted in January 2008 to begin Officer Training in the Regiment - sadly that's all been shot down with my pain and unexplained condition and my dream is destroyed. I sparined my ankles back in 2006, moderate sprains playing sport, but all seemed to heal OK. Then unexpectedly pain began in both, mild at first and only when resting not when playing sport etc. It gradually got worse and then in Jan 2008 I had to have an MRI scan. It showed some diffuse thickening of ligaments consistent with chronic ankle sprains, but no other pathology. Gave physio and prolotherapy injections a shot, seemed great for the ligaments and no tenderness there but still constant pain. Finally opted for surgery in April 2008 where I underwent an ankle arthroscopy on left ankle. The surgeon found a small cartilage tear, still intact membrane, and performed a microfracture procedure. Was on cructhes for 4 weeks as minor damage and followed rehab to a tee. Fast forward to July and scan shows all is healed but still in constant pain. IN JUNE, things took a turn for the worse. I woke up overnight with upper body joint pain that has progressed to all my joints. Now I have constant 24/7 pain in my wrists, ankles, knees, elbows, thumbs, index fingers, back and hips. It never ceases and is there on a daily basis. There is no swelling or redness or warmth, but a lot of pain and stiffness and creptitis in my joints. It never relinquishes and no meds seem to help. I have been to see various specialists and haven't a clue what to do. SUMMARY OF SYMPTOMS:Chronic pain in all joints for the last 4 monthsPain often migrates, worse in ankle joints one day and then ok and worse in knees the next. Differing pattern of pain.NO swelling/redness/warmth/sensitivity to touchPersistent pain and stiffness with crepitis tooNo associated IBS/sickness etc TESTS:Two blood tests - ESR/CRP/ANA/RA/Serum calcium levels all completely normal.MRI scans - Knees show mild case of chondromalcia Patellae but very mild and wouldn't cause constant pain. Ankles are apparently in perfect condition. No other damage in joints/arthritisIsotope Bone Scan - perfect with normal tracer throughout and no hotspots.Physical examinations - By physiotherapist, rheumatologist, chiropractor, podiatrist, ortheopedic surgeon, GP and pain management specialist. No ideas to to cause of unexplained pain. Physical examinations normal. No trigger points for Fibromyalgia etc. TREATMENTS:Diclofenac - No joy. All other NSAIDs have the same nil effectAnti-depressents - Dosulepin and Amitriptyline. No joy with these either Codeine/Co-Dydramol/Paracetamol - No relief at allPhysio/Various supplements - Glucosomine/HA/chondrotin etc and anti-inflammatory supplements with no successBiomagnetic therapy and LED therapy No effect eitherProlotherapy injections - no pain relief but has repaired my ligaments very well in sprained ankle I met with the pain management specialist who suggested I look into BuTrans patches and an anti-convulsant med like Pregabalin. Is this is a good idea? Any ideas on diagnosis of this dehabilitating condition/ I'm finding at the age of 25 that my life is falling apart, I feel worried about the future, depressed and in all honesty quite suicidal at times. Hoping you can help. Thanks all Greg Hi, I posted a really long reply, but for some reason it did not get posted. I have been going through the same thing for 5 weeks, but I am actually starting to get better now. I tested positive for Coxsackie virus. I also posted to the forum under "4 weeks of joint pain/burning and a diagnosis of a virus". Have you tested for viruses or Lyme disease yet? I was also very active before this and had to drop out of the Chicago Marathon this year. I know how awful it can be, but try to stay positive. I read a lot of inspirational books through it and it helped.
    Anonymous 42789 Replies
    • October 9, 2008
    • 03:48 AM
    • 0
    Flag this Response
  • Vitamin deficiency should also be considered as a possible cause of joint pain so it could pay to get your levels checked.. eg D levels
    taniaaust1 2267 Replies
    • October 13, 2008
    • 08:24 AM
    • 0
    Flag this Response
  • I have 2nd stage Lyme Disease. Thank you everyone so much. Without all of you I would have considered my first Lyme test accurate and never found help.
    laineylove37 6 Replies
    • October 13, 2008
    • 00:26 PM
    • 0
    Flag this Response
  • Lyme disease sounds possible.Igenex Labs in California is the best blood test to get done.However, try seeing a 'Lyme Literate' physician, as there is not really any diagnostic test that will be 100% accurate.check out www.underourskin.comwatch the trailer, see if you relate to any of them...I was in pain for 15 years until i was finally diagnosed with lyme disease.Good luck.
    Anonymous 42789 Replies
    • November 2, 2008
    • 09:29 PM
    • 0
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  • i suggest you consult a homeopathic doctor.. what attracted me most to let my daughter undergo this holistic therapy is the absence of these steroids and any form of surgery. Dr. Namaya was her doctor.
    Frank555 2 Replies
    • November 4, 2008
    • 03:08 PM
    • 0
    Flag this Response
  • Hi Greg, I just read your post and was wondering how you're doing? I am also experiencing symptoms similar to yours and am awaiting test results. My doctor is also puzzled...Please let me know.Regards,LeonardJohannesburgleonardo@carsinaction.co.za
    NeverGiveUpBoy 26 Replies Flag this Response
  • With no signs of inflammation you have polyathralgias,not polyarthritis.There are many possible causes,and I suggest that you research these causes and eliminate them one by one until you find the answer.(I misspelled polyarthralgias.)
    richard wayne2b 1232 Replies Flag this Response
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