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Severe Joint Pain and Negative tests :(
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Lawoman252 posted:
Hi all....I and 32 years old have been having severe pain for about 8 months now. It started in my knee which has always hurt me for years and slowly moved into my inner hip. I have problems walking on my left leg because of this. I have also developed in the past 4 months, severe neck, ankle, wrist and shoulder pain and stiffness asymmetrically on my body. The pain is mainly in the joint and feels like a severe ache radiating in the bone. The joints click and clack together and make grinding sounds whenever I move them. I am also getting really bad sinus type headaches and severe fatigue. The fatigue is so bad that I can barely wake up in the morning and stay awake through the day. I feel drowsy all day long and can barely get things done around the house.

I went to the doctor two weeks ago and he sent me to a Rhematologist. She assessed me and did not see any visible swelling or redness in my joints. She did diagnose me with having hyper mobile joints that bend a little funny. She sent me for blood work to check my thyroid, RA factor, ANA and lyme. She also did a full CBC. I was put on Medrol dose pack to help with the pain and it really helped dramatically. For 3 days while taking it I had more energy, didn't need to nap and the pain in my joints felt a lot better.

I also went to see an orthopedic surgeon who took X-rays of my hip and knee. He did not see any visible issues and thought the Rhematologist would of found something out instead. Well I met with the Rhematologist yesterday and she told me all my blood work was completely negative and nothing was wrong. I told her the pain had come back full force since being off of the Medrol and she said I was OK and didn't have Lupus, RA or thyroid issues and that my main problem was Fibromyaligia. She didn't give me any meds to help and told me I needed to see a Psychiatrist for possible depression. I am not depressed, I am in pain all the time and can barely take care of myself and my son. At this point I am going back to see my regular doctor and find out what is going on with me. I am not having pain in my muscles so I have no clue how it could be Fibromylagia. Has anyone had similar issues like this? It's slowly taking over my life and the pain is so unbearable.

Also, I am on Norvasc for Hypertension. I also take Xanax and Celexa for anxiety I had years ago that is now controlled.
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RAkay responded:
Sounds like you're going through what I call the "Agony of Not Knowing" in addition to pain. I'm a very young 66, have had symptoms off and on of Fibro and RA since I was a teen....back before Fibro had a name! My sister and I have researched Fibro from the beginning of the internet as the name has changed. Getting diagnosed with these invisible illnesses, which are inconsistent in their symptoms and severity at times is a terrible frustration! Don't give up! I went through my 30's and 40's with so much pain and agony and no help. Today it should be easier to get help and I'll give you some specific suggestions.

Everyone with chronic pain from any source is somewhat to severely depressed. I switched to Cymbalta, which also helps greatly with pain, six months ago, and felt an immediate lift, while I thought my old anti-depressant was doing a good job. That's one thing you family doc can do for you immediately.

At least today, women aren't written off as crazy with complaints of chronic pain without a specific diagnosis.

I would encourage you to switch to an Internest as a family
physician because they are usually better informed on these mysterious illnesses and see more of them.... and their referrals may carry a heavier weight.

Don't feel isolated and alone. There are so many women out here dealing with the pain -- and unknowing -- that you are. The worse part is having an "invisible disease." The more rest I've finally gotten in retirement, the better I look, and therefore the harder it is for family and friends to believe what I live with.
Only the meds I take make someone believe me.

The RA factor in blood tests doesn't show up in some 40% of cases, I understand, and you may have had lab work when you were not in a flare, although you still didn't feel good.

Insist on a different Rheumatologist. Yours may deal with much older, crippled patients (My original one did and simply dismissed me as "not sick....enough." Find a young specialist if you can ....and preferrably a female, since these are primarily women's diseases. And don't give up. You may have to be a bit "pushy" and insistent with your doctor or future doctors. Don't let any one doctor blow you off. They are all "practicing" medicine and have many different philosophies....including attitudes toward pain, and women complaining of pain. Ask around about doctors and get some recommendations. Don't let one or two doctors be your "gatekeeper" between their knowledge or attitude and your need for help with pain and the underlying problem. Good luck!


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