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8 Replies
KHawley - February 11

Hello,

I just wanted to take a moment to introduce myself and to say hello. My name is Kerri and I have been having strange symptoms for a few months now for which my doctor and I are trying to find a cause for. My nutritionist and doctor are both wondering if it is FM, but I am aware that I may have something else as I am having a lot of joint pain without swelling. So far, my neurologist has not discovered any abnormalities, after testing for my dizziness. My next appt. is with a rheumatoligist. Anyway, I was wondering if some of you could share what the severity of your symptoms were, especially in the beginning. Did they start off mild and gradually become more severe or were they severe from the onset? Did the symptoms change over time or has there been some sort of pattern? Thanks, everyone!

 

JJ1 - February 12

My symptoms started sporadically, although fatigue was pretty steady from the beginning. My pains would be a hurt shoulder for a month or so, then it would go away and then my knee would ache or my neck. After thinking that my orthopedic doctor surely thought I was a hypochondriac, he sent me to a rheumatologist. That is where I was diagnosed with fibromyalgia. I was prescribed amitriptyline to help me get REM sleep and that has been a life saver for me as far as the pains go. I only get them rarely now. I have had a lot of recent stress and have irritable bowel syndrome flare up and some occasional aches. In summary my symptoms have been sort of like a roller coaster with the highs being pain and the highs have been fewer and further between than when I was first diagnosed but still there.

 

cwatson - February 12

Hi. I am new here as well. I actually have not been officially diagnosed w/ this yet. I have an appointment tomorrow w/ a rheumatoligist which I have been waiting for ever for! I have only had the symptoms for 3 months. It started in my right leg towards the top. Then it spread to feet/hands/elbows, shins/calfs etc. I am glad to say the fatigue has let up alot and the pains are sparatc. My feet and shins/calfs give me the most pain. Lots of cramping in my feet. I hate not knowing the reason or exactly what it is. I have been to a primary who blamed it on stress, then I went to a neurologist cuz I freaked myself out w/ worse case senerios which I think they ruled out. Now I am finally going to a rhem. tomorrow. My crp levels were high but other than that I had no issues w/ my blood test. My vit. B levels were a bit low but now below normal. My prim. has me on a folic acid/vit b supplement which has helped I think w/ tingling. Also, I started a magnessium supplement that helps w/ nerves and muscles which I think has helped. What testing have you had done by neurologist? Blood tests? Good luck.

 

KHawley - February 12

Thanks to the both of you for answering. That helps. cwatson, my first symptom was almost dibilitating dizziness for 6 weeks, so they were having MRI's on my brain and neck done as well as basic neuroligical exams in the office testing my brain functioning. That went away for over 3 months after a final antibiotic prescription. I was shocked when that strange dizziness returned at the beginning of January. Only, the dizziness has not really continued, but pain took it's place. It's not dibilitating pain yet, just puzzling and makes it difficult for me to concentrate. I was at a meeting at work, trying to focus, and it felt like some sadistic person was in control of a pain dial and was turning it up on me. It felt like pain just seeped into my bones in my shoulders, upper back, neck, clavicle. But, the pain keeps changing and I am confused. Some days, it is only in the background and I think I'm getting better. Then, the next day my shoulders hurt again and my hands and wrists. Is it RA? Is it FM? Is it MS? I hope to find the patience to work through these and find out. Good luck on your rheumatologist appt. tomorrow! Let me know how it turns out!!

 

JJ1 - February 12

I hope both of you can continue to be patient. Seeing a rheumatologist is the first step towards diagnosis, but as you probably know, diagnosing FMS is not an exact science. They eliminate other ailments, like rhematoid arthritis and MS and assess your symptoms and make a determination from there. It can take several weeks to a month before all the testing can be done. Good luck to both of you.

 

cwatson - February 12

I had an MRI done which ruled out MS. My blood tests ruled out RA. What other main testing is done to rule out other conditions? what are the primary other conditions that need ruled out?

 

KHawley - February 12

Well, an MRI to rule out MS and a blood test to rule out RA are good indications. However, not all people with RA test positive with that blood test. My boss has RA (undoubtedly has it) and tested negative for that test. (I am not saying this to scare you- she had to find a new doctor after the first one refused to treat her with RA due to the blood test results, found a fantastic, experience doctor and had a treatment that put it into a nice, long remission. I'm only saying it so that if new RA type symptoms appear in the future you will be able to seek proper treatment). You may want to post your question about other tests to a new post, as I am new to this too.

 

JJ1 - February 12

Throid disturbance, Lyme disease and chronic fatigue have similar symptoms. There are also a whole slew of things that can co-exist with Fibro, complicating diagnosis, such as Raynaud's syndrome. Click on the "associated conditions" on the sidebar of this site to get a good list.

 

cwatson - February 12

I agree w/ the RA blood work not being a true test. A family friend went to her doc. for a year and repeatedly took that test w/ neg. results. Its in her family history and she new she had it. Undoubtedly after a year of constantly explaining to her docs she had it, her test proved pos. and now she is feeling alot better.

 

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