SEVERE Transient joint pain

By Daffy Wednesday, July 15, 2009

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I am in my low 40's looking for answers to an illness I've had for the last 9 years. 5 specialists have narrowed it down to a combination of multiple autoimmune diseases (RA/Lupus/Mixed Connective Tissue), however, they have all said I don't fit those profiles either.

My symptoms have changed over the years but the consistent ones are: SEVERE transient joint pain (usually in only one joint at a time) and the pain feels more like the ligaments rather than the joint itself and like I have brusing in the tissues. It comes on very quickly (sometimes within 1/2 hr) into one joint that becomes so painful I cannot function. It will stay in one joint (say my right knee) for about 8-24 hours and then start to fade in that joint and head into another (shoulder, feet, hips, wrist).

The pain is so severe that I am bedridden most of the time with pain killers not working at all and just sobbing from the pain. When it is in my feet, it feels liek I'm walking on broken bones, if in my shoulder/elbow/wrist it feels like pinched nerves that are so swollen they won't fit thru my carpal tunnel and my fingers go numb without being able to move my fingers.

The Dr's have me take extra prednisone however, I have been up and down on different levels of prednisone now for many years and does not help the pain at all for several hours not to mention the major weight gain, etc.

Most of these occurances happen just before a change in pressure due to a storm.

Other symptoms are: very low energy level, very tired even after sleep, itchy rash/hives if I don't take Zyrtec, hair falling out, elevated white blood cell count all the time

I have been tested for Lymes at least 9-12 times all negative

tested for Lupus and does come back positive but have no other symptoms

I really need help, if anyone out there has experience with this. I cannot cope with this level of pain any longer.

Comments (9) | Add comment

AmericanLadybug

7/16/09 5:06pm

You mentioned that your white blood count is always elevated. Have you been tested for leukemia and other related disorders? Did your body experience a trauma right before these symptoms started? I know it's difficult to accept a multiple diagnosis and then be told that you don't fit the profile of such a patient. I also experience transient joint pain yet mine is always blamed on Fibromyalgia or Chronic Fatigue Immune Deficiency Syndrome or Major Depressive Disorder. I would contact the head of the department of Rheumatology at the nearest teaching hospital and schedule an appointment to see him/her. I hope the doctors are able to reach a diagnosis instead of "guessing".

Daffy

7/21/09 12:18pm

Thanks to all who responded to my post. It's a relief to find people who understand and have been there.

Leukemia has been ruled out....Churg Strauss is a possibility as I did have nodules on the lungs that have since disappeared.

I had been traveling quite a lot to many Islands right before I got sick however, I have had trouble with my immune system since birth.

I think I will seek out help from a local teaching hospital. I'm just not sure what else to do at this point.

Thanks again for all the well wishes.

Anonymous

7/16/09 7:14pm

I also have pain in joints that moves from one place to another. I am mid 60's and also test positive for Lupus without other symptoms. I also tested positive for Gout with high blood levels of uric acid. Given Allpurinol, seemed to help for a couple of months then the pain and swelling all over continued. Have been told it is a combo of Fibro, Autoimmunine, and Metobollic. On pain meds, ho ho. Our symptoms are almost exactly the same except for the pain level that I have been able to tolerate thus far with my meds on some days. I do pray you find an answer soon and please post it. I will do the same if I am so blessed. My prayers are with you.

7/16/09 7:58pm

Hi, I have had RA since I was 32 years old. I am 53 and am at the moment going through a major flare up. Many of your symptoms are the same as mine, It picks on certain joints, at the moment its hands wrists and elbows. I find volterol helps me on a once a fortnight basis, like you I have had to up my steroids to treble today, but hope to get them back down with 2 weeks. I have gained 3 stones in weight as a result. Does your test show RA at all? I am also half way through Retuximab for the third time. Although it helps, it takes along time to work, but I do get relief for a few months at a time. Shame it ended so abruptly. The pain is very intense, I so hope they will find a relief from pain for you, better still a cure, my best wishes. CJ

7/16/09 9:30pm

You sound like I was for about 4 years. Same thing, doctor, allergist, internists. The rash got so bad I went to the dermatologists, took culture and I did have a Mercer, but it was on my skin and said it was from scratching. He prescribed Tetracycline, 2 times a day for 6 weeks. My rash disappeared and I felt like a new person. The aches were gone too. I wondered if I had Lyme. I have heard you can be tested many times before it shows up. We summer in the Hamptons and here on Merritt Island there are lots of ticks.

I now keep a supply in and when the rash and aches return I take it until the rash clears. Sometimes it is only for a week. I would recommend trying this, still wondering what it is.

Mz. Chicago

7/18/09 6:41pm

MY heart goes out to u and my prayers r with u that the doctors will find out wut really is go n on. I have Lupus autoimmune connective tissue I truly understand i have ome the problems hair loss rashes achieness. Trust in GOD with all ur heart HE IS A HEALER!

freddie

9/15/09 9:13am

I'm happy to know I'm not the only nut out there...I also tested positive for lupus but was told I don't have lupus. I do however have the severe joint pain that is very dibillitating and changes over a 12 hour period to all parts of my body usually striking 3-4 areas more severly. I have no releif from pain killers either! I'm still searching for help and an answer. My heart goes out to you good luck.

Daffy

9/29/09 10:37am

It does somehow help to know you're not alone, though I wouldn't wish what we go through on anyone. I do test positive for RA however my symptoms are not atypical of RA. I have been much better over the past several weeks and am hoping it will continue. Not really sure what to contribute it to.

I was referred to a Dr. that specializes in accute cases of Lyme that do not test in the blood. I'll post the results once I find out. Thanks for the feedback.

freddie

9/30/09 8:53am

Thank-you for the support...I'm going onward and upward in my search for a cause and/or treatment. I'll keep it posted. I'm tired on the steroid, vicodin routine especially since it doesn't work.

SEVERE Transient joint pain

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