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Treatment with medication
2 Replies
kimsco444 - March 12

I have dealt with chronic pain since childhood with a diagnosis of Juvenile Rheumatoid Arthritis. I have always been a successful business woman with a masters degree but then at the age of 33 my life turned for the worse. Fatigue, joint pain, fevers, sleep disturbance with unbearable pain. I began falling behind at work and lost the ability to cope with simple things. My general physician referred me to an out of town rheumatologist who treated me for 2 years with plaquenil then methotroxate for "mixed connective tissue disease". Reluctant about the side effects of this medication and the burden of out of town travel, I trid to get a local rheumatologist who upon my second visit stated that I did not have a mixed connective tissue disease and did not need treatment. He said I had fibromyalgia, and needed a psychatrist. (in front of my new husband) So I went to a specialist at University of NC and she said same thing (but did not review my blood work). These are my test results
Positive ANA, High Sed Rate, hight C reactive protein, low RBC, low hematocrit, low neutrophils, high lymphs, low neutrophils absolute, High AST and ALT (liver), Low Complement 4, low TSH. Symptoms: skin rashes, nasal sores, severe fatigue, fevers lasting 3-4 days 99.6-100.5, small joint swelling, pain and redness, chest pain, numb hands, fingers. Cervical disc disease, degenerative disc disease, breaking teeth, bruising, falls, brain fog, irritable bowell, and the typical nerve/muscular pain with fibromyalgia. I've seen so many doctors and each one has a different diagnosis- I'm just about ready to give up. I've tried everything, not just short term, but for months at a time and dedicated my self to every therapy, physical treatments, meds, alternative, massage, vitamins, spiritual reliance, books, psychotherapy, antidepressants, exercise and I'm not better. I have found some things that keep me surviving, but that's all I'm doing and I want my life back!
How do I know which doctor is right? Most recently a new rheumatologist stated I have symptoms of fibromyalgia and lupus. What if she's wrong too and the meds are worse than the disease.
Any support is greatly appreciated! :)

I have found some things that keep me surviving, but that's all I'm doing and I want my life back!


JenV - March 13

I can relate to your frustration while you feel bad everyday, loss of your old self. For me I have been seeing a psycologist for 4 years along with a psychiatrist. These 2 professionals luckly work together with thier patients and beleive in the less meds the better....better coping skills. At this point I am suggesting this because no matter your multiple diagnosis you are physicaly sick and frustrated. There is no quick fix...hard to accept, yes. In the 13 years of having Fibromyalgia I have found in my experience that an Orthopedic doctor is the best choice one that understands the disease fully. I have been to the neurologists, rhumatory specialist, bone and joint speciaists...If all of your tests are inconclusive and it seems you have been going through a process of elimination. This is how doctors reach the diagnosis. I have found in my experience that some doctors are reluctant to diagnose fibro due to the lack of cure and concrete reasons for this disease. Dont be discouraged, I know it is hard. So many people have gotten the run around. May I also suggest that you collect a copy of all your medical records and take them with you, have control of all of your information. I beleive Lupus can be found with a blood test but I am not a doctor...get it ruled out. I know I want my old life back too but I know that it wont come back and I have to deal with this as best I can, acceptance is the hardest I think. I have had combined my therapy with Orthopedic, psychologist, phsychiatrist for years and although I am not cured it helps. I still have alot of bad days but we are not alone. I hope this has helped. Oh one more could be beneficial to gather information for your new husband so that he can learn and understand what you both are going to have to deal with if you in fact do have fibro or other health problems as well. The more support you have the better. Hang in there!


Jean Taylor - March 16

I could write almost an identical email including the original MCTD diagnosis. I finally was diagnosed with FMS this past summer when the pain was so bad it had me bedridden. You just have to keep searching. It's no fun esp. on the super-bad days like today for me. My husband is understanding but still overwhelmed by it. The rest of my family just doesn't "get it." I truly think people just don't "get" how much pain we are in...I tell them it's like having THE flu all of the time but even that doesn't work. It's very frustrating. Just garner support from wherever you can. Good Luck to you.



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