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aheilmann posted:
I've been struggling with joint pain, hypothyroidism, and frequent fatigue off and on for about 10 years. I had a positive ANA a few years ago, but a rheumatologist didn't think it was a big deal. In addition, I had aseptic meningitis last year. Since then, I have recurring migraines, occipital neuralgia, myofascial pain, sensitivity to cold and light, dry mouth, extreme fatigue and malaise, a positive ANA with a titer of 1:640,weird symmetrical swollen areas on my hands (they look like ganglion cysts in the fatty pads of my knuckes), a Rheumatoid Factor of 12, and an elevated ESR of 28. I had a lumbar puncture with slightly elevated cerebral spinal fluid (nothing major). The most recent rheumy visit didn't turn up anything. He said he didn't think anything was wrong. My neurologist believes I have fibro. The last rheumatologist I saw specialized in Lupus--so my Neuro suggested I go to a different rheumatologist--they don't have an appointment until February. I would love to hear your feedback and insight on this.
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dollbug responded:
Hello and welcome....ok...let me get this straight...*he didn't think anything was wrong*....so what does he think is causing these things? It is interesting to read posts from FMers who go to doctors and the doctors can not find anything wrong....and this is what the doctor tells a patient....

First time is I would call around and try to find a good doctor who treats FM...there is no doubt, something going on with you...FM is such a hard health issue for doctors to figure out and help people with....there are still doctors who do not believe it exists...but I can certainly assure you that it does...and it is left up to you to find a good doctor who will help you find something that will help you cope better..

I do hope you will learn all you can about the wrath of the dragon, aka FM....there are some things that you can do yourself that might help you...it does take a trial and error process...there are no magic pills or quick fixes to this...and what works for one person may or may not work for you....we are all different...

I tried several different medicines in the beginning and did not find anything that helped me enough without causing side effects do I ended up doing my own research and I now *control my FM pain by taking vitamins and supplements and doing other things as well*...I am not painfree though and I do not expect to be...

You will find some good *tools* under *tips* and *resources* that you will find to the right of this page...I hope you will check it out..

I would like to encourage you to be sure and ask your doctor to check your Vitamin D level....which is important to a lot of people these days...low Vitamin D can cause additional pain for some of us and it can also affect other illnesses as well. It is a simple blood test...BUT you MUST ASK the doctor to do it...as it is NOT included in the normal bloodwork that they doctors do..
(I thought, for sure, that the insurance companies would catch on to this by now and included it in the normal bloodwork that all doctors do)....things do take a while though for others to figure it out....

Using a heating pad is good...watching your diet and drinking plenty of water is also important...doing gentle stretches or gentle exercises is also good for FMers...(GENTLE being the key word)....taking a hot shower at night using lavender bath salts in a stopped up drain is also good for the body to relax so that you can get enough sleep...there are only a few of the things that I have learn which helps...also using Stopain spray as needed...

I only wish I could tell you something that might help your fatigue....I also have chronic fatigue and I have found *nothing* that has helped it...

Above all learning how to pace, pace and then pace even more is important....keeping your stress level low is also another thing that is important...

I hope you will hang out here with us...learn all you can...and keep us updated on how you are doing...

We do understand...and know just how hard it is...

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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aheilmann replied to dollbug's response:
Thank you for your advice! My physician stays on top of my Vitamin D. I also take a daily supplement of Vitamin D. My neurologist has put me on gabapentin and is working me up to 900 mg over the next two weeks.

Thank you for your other suggestions. I will definitely put these into action! I'm on the prowl for a good fibro doctor!
 
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xperky responded:
I hope the new rheumy has some answers for you! Does the new one focus on RA? Your knuckle pads sound so much like RA nodules.

I'm glad your Neuro is treating your FM, and I hope you begin to feel better soon.
With Compassion,
Margaret
 
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thenikki64 replied to aheilmann's response:
I can't recommend the Stopain spray enough! I thought it was a bunch of malarkey (thanks, Mr. Biden, for reviving that one!), but it gets me through some of the worst neck pain I've ever experienced.

FYI on the gabapentin: great drug, helps lots of folks, but causes weight gain, so be prepared for that and don't freak out over it.

Lots of good info on this site. I still don't have a 'fibro doc', but my gp, pain management, and rheumatologist have it together. I must say, I am always negative on all my blood tests for RA but because I had redness and swelling in my hand I had an MRI, and my MRI showed erosions in my joints, so I was diagnosed with RA and take plaquenil. Perhaps you might request an MRI on the joint that was swollen? If RA is untreated, the joint damage can be debilitating. Early treatment is key. Just a thought.

Hope all is going well!
Pam in Savannah
 
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Anon_10089 responded:
I wanted to add that you should pursue your elevated numbers with hopefully a different doctor. Many of us with FM that don't have any other conditions like RA, do not have elevated ANA, etc. I'm surprised that your doctor is not exploring other things. You may benefit from an anti-inflammatory since it seems like your tests are showing inflammation. I'm not a doctor, but keep pursuing those test results.


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