I am 50 years old and have been having Arthritis problems for 4 years. I started with pain in the hands in the knuckles closest to the hand and the middle knuckles, (with swelling) & pain in the shoulders & neck. My dr. did bloodwork that showed slightly positive RA and elevated Sed Rate. I was referred to a Rheumatologist. Since that time the Rheumy left the practice & another took over. I have had pain and stiffness progress to my hips, a little in my knees and elbows. My feet have recently become terrible. Right now I can hardly walk on them. When I get up in the AM I feel like marbles are under the balls of my feet and my toes don't touch the ground for a few minutes until they stretch out. I have been diagnosed with Osteoarthritis in my back & neck which gives me lots of pain and stiffness. My bloodwork has all been normal since my first referral other than HLA-B27 positive. I feel better when I'm active. I get very stiff after sitting for a while. I sleep very little without a sleeping pill because the pain wakes me off and on all night. My doctor can't come up with a diagnosis but leans toward some type of inflammatory arthritis, but the bloodwork doesn't back it up. He doesn't think it is RA or AS. He sent me for a second opinion (dr. #3). The referred doctor, in 30 minutes, said he thinks it is all Osteoarthritis, just widespread, as well as Fibromyalgia. I take an anti-inflammatory which helps, and am on pain mgmt. with my PCP. I now have two different types of ideas and have no clue. I know of a Rheumy that is well known in my area but not on my insurance. I am thinking of paying out of pocket just to see if he can diagnose me. Do most people have to go to multiple doctors to find out what is wrong?

Hi Mimi

I am sorry that you are going through the pain and the frustration of not having a diagnosis. I went 15 years until I was diagnosed with lupus and fibromyalgia. But recently I was also diagnosed with osteoarthritis and degenerative disc disease in my spine and lumbar spinal stenosis. (though these were diagnosed pretty quickly once I mentioned my symptoms to my current rheumy). My rheumy also had me get another MRI of the sacroilliac region to check for AS but that MRI looked pretty good except for early arthritic changes.

I used to go to a different doctor for every symptom. Dermatologist, Internist, Kidney, Eye Doctor. But I also didn't always have insurance. I had horrible pain and swelling in my ankles for a year and nothing helped. I went to a foot doc almost every week and racked up all my credit cards to pay for it. In the end he didnt know what was wrong with me, just kept saying I had synovitis or something.

My current rheumy had me try low dose Elavil for the fibro (supposedly low doses seem to help the pain of fibro). For me, it doesn't help my pain however it is like a sleeping pill for me except it's not addictive. I used it for a year straight without any side effects and it put me to restful sleep every night ( of course this was my case, i cant say how anyone else might react to it). So even though I had pain this allowed me to fall asleep. I also wake up several times a night to use the bathroom but at least on this med I fall right back asleep and still feel refreshed in the morning.

But yes, so many people who have arthritic or inflammatory (or other diseases) go through many docs over many yrs before getting a diagnosis. Some never get a positive diagnosis. But that shouldn't keep you from trying to get one. If you think you can afford a good doc out of pocket, then do it. Also, I see you had several tests done, but have you ever had x-rays and/or MRI's? I know with AS the spine bones and sacro bones can start fusing together, and imaging would help alot to check for that....

same story here-----arthritis everywhere. some bearable some horrible. i have injured many joints and my lumbar and cervical spine at work over the years so it is very difficult to stick with one dr. my pcp oversees everything. the ortho wants to do surgery on my neck, the PM dr. thinks PT will cure all but in the end my rheumi has given me more relief than anyone. tried the elavil which i had taken years ago and had some bad reactions this time. could be the addition of my BP meds. rheumi is treating as if i have fibro. we know about the arthritis everywhere but if he gives me an injection in the muscle it takes the pain away almost immediately. have had 4 to date since feb. don't know what this will mean with my WC case but i just love him and he is a great help.

Thank you both for your replies. Wow. It sounds like you two have been through some tough times. I sure hope it doesn't take me as long to get a diagnosis and hope I get one! I have taken Elavil, years ago when I was having constant migraines.

I have had x-rays pretty much everywhere but my feet and hve had two MRI's. One was three years ago on the lower and mid back that showed the osteo and Degenerative Disc Disease. I had one on my neck in April that pretty much showed the same. With a nuculear bone scan last year, I had a few hot spots in the shoulders, pelvic, feet and a rib. They did follow up x-rays of my rib, which showed nothing, although I can touch the exact spot and it is painful, and of the pelvis which showed nothing significant.

I can't really afford to go to another doctor out of pocket on a regular basis. I am planning to go to him with my records on a one time visit and see what he has to say. I have a friend who is a patient that is going to talk to him first. If I think he can help me, I can get on insurance that he accepts. Our yearly sign up is at the end of the year and starts Jan. 1.

I haven't been treated for fibro to see if it responds, other than my Rheumy took me off of my anti-inflammatories and put me on Lyrica for a couple of weeks. That just set me off more and I could barely move. I was much better when we changed back. The last one I went to that diagnosed osteo and fibro did nothing more than ask if I had heard of fibro, handed me a pamphlet and said something like..."it is widespread pain throughout the body that some people have and we have no idea why". He also had a big sign in his exam room that said "this office does not treat fibromyalgia", which I thought sounded kind of rude. I do have two friends with it and know it is a hard illness. Thanks again for your replies.

that is rude. it sounds like he is saying it doesn't exist. pooh on him!

There are well over 100 different types of arthritis and no one test covers them all. Many of the forms can not be tested for and are diagnosed by ruling out every other condition.

Additionally there are several conditions which mimic arthritis but are not arthritis at all. There's been a lot of conversations about Lyme disease lately being one of them.

I've had OA since I was a young girl. When arthritis started to appear in my other joints the doctors could not understand why. My SED rates are always normal and I test negative for RA. After seeing dozens upon dozens of doctors by the time I was 30 I finally got a proper diagnosis of Ehlers Danlos Syndrome.

Bottom line you need to keep seeking answers or you need to accept your current DX.

As far as FMS goes, not all doctors believe in it nor do they believe in Chronic Fatigue Syndrome either. They feel that because there's no actual test for it other than having to have X amount of trigger points of pain and after ruling out everything else, that it does not exist, thefore they do not treat it. A doctor isn't required to treat any condition if he does not wish to.

I was diagnosed with FMS and CFS over 15 years ago. I've had more than one doctor tell me that it was a bogus diagnosis.

Thanks for the info Kissa. I appreciate it.

It's funny that you mention Lyme Disease. I had a tick on me for a two or three days back in 2000. A few weeks later I got very sick with all the symptoms and was diagnosed by the hospital as Lyme Disease. I have a copy of one of the blood tests results. It was an EIA test. Underneath it saying positive, it says "Repeated and Verified". I was given 3 weeks of Doxycycline. I thought the first Rheumy I went to had checked for it but when I read my records she said she had forgot to have them check it. So, I had my current Rheumy do a test for Lyme test last year and it came back negative. The doctor I was referred to the other day said since the one they took last year was Western Blot and said negative, that means I never had Lyme Disease. I do remember being very sick, with all the symptoms, as well as a faint target around the site. He said that all bites can make you sick. Now I am so confused. He's the first doctor that ever said that to me. I have been concerned all this time that it could be something to do with that tick.

That's one reason I feel like going for another opinion. Lots of what he said are so different from what I've been told so far that I don't know what to think.

I'm glad you finally got a good diagnosis. I'm not sure what Ehlers Danlos Syndrome is but I will look it up. I never knew when this started that there are so many things that have similar symptoms and so many forms of arthritis.

Thanks again!

Hi Mimi - I don't usually check this part of the Health Boards because I'm never really sure where I fit in the Arthritis world. But I'm glad that I decided to drop in today and had a chance to find your post! This is a lengthy post, so only read on if you have at least 5-10 minutes!! Beginning in 1995 I started having some strange and apparently (to me anyway) unrelated physical symptoms. I woke up one morning and I couldn't move my thumbs. They seemed to be locked. If I ran them under hot water for a few minutes they seemed to loosen up enough to use them again. This continued day after day until I finally went to my primary care doc who sent me to an ortho doc who gave me some sort of injection in both thumbs which resolved the problem. A few months later I started to notice that everywhere on my body that I would injure (meaning a scrape, a blemish, etc.) would heal without the normal skin pigment! In other words, I was healing with white patches instead of normal skin color. It wasn't wide spread enough for me to actually do anything about, it was just a curiousity to me. A few months later I literally woke up one morning and could not move my hands, wrists, fingers or feet. I was in so much pain!! Like you, I couldn't take a step. My joints felt like they were fused together. I got myself to a rheumatologist and she ran all the requisite tests. Of course they all came back NEGATIVE ....everything normal! I didn't mention my other symptoms to her because I didn't think skin color or my thumb problems could be related. She diagnosed me with osteoarthritis even though I had all the classic symptoms of rheumy. When anti-imflamatories didn't work after a long course of treatment, she re-evaluated me and tested again. STILL, negative for rheumy. She decided that perhaps I was serum negative rheumy and she put me on a drug used to treat rheumy. I forget the name of it now, but it is used to treat Malaria as well and it worked like a charm, relieving me of all my pain. Since I responded so well, we assumed that I did have rheumy. I tested positive eventually....but only 1 time, then labs went back to negative. Eventually the rheumy drug stopped working. All the pain came back and I was back to square one. My next symptom came in the form of major lung problems. I couldn't breathe well. It was like my lungs were going into some sort of spasms. So off I went to the pulmonologist (sp?). My next diagnosis was the scariest of all!! After many, many tests and several trips to Johns Hopkins I was diagnosed with Primary Pulmonary Hypertension. This isn't anything like regular high blood pressure hypertension. Pulmonary (lung) Hypertension is usually fatal (or was at the time of my diagnosis, currently I think they have new and much better drugs). It was cause enough for me to go onto a heart/lung transplant waiting list at the time. I was scheduled for some exploratory surgery at Hopkins but 5 days before my surgery, my pressures came back down to normal! Amazed, the docs couldn't figure out what was going on. Folks with true pulmonary hypertension (primary hypertension) don't just "go back to normal". But that's just what had happened. So surgery was cancelled. I was still having some trouble breathing and my oxygen levels in my blood were still very low. Because of this the docs put me on oxygen and Prednisone to help the inflamation in my lungs. The prednisone really helped my breathing AND had the added effect of taking my joint pain from about an 8 on the scale of 1-10 to about a 3. If you haven't stopped reading this story by now then you probably have way too much time on your hands!! But I'll continue. All of the lung problems happened in 2000. Since then my lung pressures have been measured off and on and sometimes they are up and sometimes not. Starting in 2005 I began getting many bruises on my body. Sometimes I'd wake up in the morning and it would look like I'd gone three rounds with a heavy weight contender!! It was very embarrasing to walk around looking like my husband had beaten me up all the time. In addition, I was always fatigued...I could go to sleep at 11:00pm and sleep straight thru to 2pm the next day. Subsequent tests showed that my body was not making enough red blood cells. My hemaglobin and hematocrit (sp?) were both so low that I required a transfusion on one ocassion. We soon found out that my body was destroying the part of my system that creates red blood cells. It isn't cancer, it's a different condition. The only thing that keeps my numbers up is taking a drug called Procrit which some cancer patients use to keep their blood counts up while undergoing chemotherapy. So here was another strange problem and symptom to add to the already weird stew. The skin pigmentation problem worsened and in 2004 my dermatologist biopsied some of the "colorless spots" to see what they were. The results came back as Lupus. LUPUS?? Wow, now it all began to make some sense. The docs now think that ALL of the symptoms from the joint pain, pigmentation problems, lung spasms, immune system attacking my red blood cell source and some other odd symptoms are all a part of the autoimmume disease Lupus. This is just a working diagnosis at this point and so far we haven't come up with any treatment. They just formed this diagnosis about 2 months ago. All of this is just to tell you that there are so many things that can be going on with you and your immune system that may NOT show up on serology tests and other tests. This isn't a reason to think that it's all in your head!! You know your body and you know when something is going wrong. You know your pain is real. I hope that you will continue to seek an answer to your syndrome. I would also urge you to go back and follow up on the "tick" theory. Sorry this has been so long you guys. If anyone has had a similar situation as mine, I'd love to hear from them. Thanks for listening.

Thanks for the post. It was very interesting. I tend to bruise easily too and completely understand how embarassing it can be. I have even used concealer on my arms to try to cover up spots at times. It's amazing to me how so many different things can finally come together after awhile. I'm so glad they finally figured out what was going on with you and you can be treated properly. I'm sure it was a relief just to know what the problems were! It encourages me to continue trying to find out what is going on with me. I'm so glad you came across my post!

Thank You!