no diagnosis and losing hope | Arthritis Information

I'm new to this forum and hope my symptoms sound familiar to someone as my employer, co-workers and doctors so far believe there is nothing medically wrong with me.  I was diagnosed with Chronic Fatigue Syndrome 6 years ago, and it has never really subsided.  Then last November my lower back and knee "collapsed".  After months of pain meds, and no relief an MRI was done.  It showed DDD, but Dr. said it wasn't surgical, he could do nothing more, and that maybe I should seek "alternative" care, but told me to keep taking Vicodin for as long as I needed-I'm now on 3 per day, which most days keeps the pain at a level that I can function.   I now have numbness that comes and goes in the feet and pelvis, both knees are extremely painful, and at times swollen and have rashes on them.  My neck is also extremely sore and I'm getting bad headaches.  I just switched to a new internist who ran tests for "arthritis",and am anxiously awaiting the results this week.  I feel that if I don't have a diagnosis soon, I'll lose my mind!

Thanks for listening, and appreciate any thoughts

 

 

I hope you get your DX soon so you don't go crazy! Again WELCOME! What really concerns me is that along with your pain, you also have a rash on your knees.  Was the doctor you saw a rheumatologist?  If not, you might consider visiting one. Your story sounds so familiar.  I've read similar posts here countless times and it usually ends with "The doctor has determined that it's all in my head" or some variation of that theme.  Some here have waited several years to get the correct dx, but eventually they did.  You just have to be strong and hang on until you get the answers you need.  Easy to say, I know, but others here have been successful and I'm betting you will be too.  In the meantime, let us "hold your hand" through this trying process.  We understand what you're feeling and we want to help.  thanks so much for your responses.  I'm seeing an internist, but chose him because he has a Rheumetologist in his practice.  I have an HMO and need a referral from my PCP.  From reading all the posts here, I see that if you can do it I can too!  Its difficult to have a very active life so interrupted.  I'm a grandma of 3, work full time as a vet tech, and am a part time student trying to get my business degress so I can dwitch gears to a less active career. Don't give up. With this disease, you not only have to advocate for yourself, you have to doctor shop until you find the near perfect match. It may take some time. Be persistent. Get the tests done that you need. Have you tried Lyrica for your pelvis and feet numbness? It may help with that as well as chronic pain. Has your doctor mentioned fibromyalgia? Look into all these subjects and approach your doctor about them. Sometimes the squeaky wheel gets the grease. Hi Grammy of 3!
I don't blame you for feeling like you're losing your mind- chronic pain is terrible- the only thing worse is not knowing the cause. Everyone above has given excellent advice. I don't know where you are in Michigan, but I have a wonderful rheumatologist in Petosky at the Burn's Clinic. Dr. Huebner and his staff are amazing! So sympathetic and very interested in getting to the bottom of the situation.  He diagnosed my RA and Marfan's.

One odd thing about this disease is how it affects each person diiferently and what works to relieve one, doesn't always work on another. I hope you find a Dr who work at finding what's right for you!

Take care
You don't give up, this disease is "cunning, baffling, and powerful".  Heck, the MDs haven't figured it out yet.  Keep up your strength and never give up, keep going back until someone finally runs the right tests at the right time for your condition.  There is a stat around here that as women are 75% of the RA population - men are diagnosed on their first visit, women average years before diagnosis.  You are fighting a huge machine.  Take care CathyI still don't have an absolute diagnosis either, but my GP is treating me for FM. Keep at it. Your insurance company would most likely want it otherwise, but if you are in pain you need to persist. Document everything. It makes a world of difference in that the doctor you see has a tangible history.
Hi and welcome. I can remember the waiting game too- it's awful! Hope you get your answers soon.
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