Fibromyalgia - Cherryville,MO

Updated on September 25, 2012
S.J. asks from Cherryville, MO
5 answers

I was diagnosed with it about 2 years ago. Since then, I have been on mucinex and digestive enzymes (I have bad IBS as part of the fibro). My symptoms include tummy issues (IBS), GERD, numb hands/arms during sleep, very tight ankles upon waking, sore joints/knees, reduced tolerance for exercise, horrible back pain (like right under my shoulder blades and at the very back of my neck, bad headaches, extreme fatigue....and on and on.....)

Does anyone else have this or is close to someone who does? Any tips/hope you can offer? I just have a very hard time believing I am going to feel this way the rest of my life....I am miserable some days!

Also - WHY do people not believe fibro is real?! Why do people insist that we must have something else wrong and that fibro is just what docs say when they cannot find anything else wrong? None of my research indicates that. In fact, it indicates that we have an autoimmune issue similar to lupus and/or overactive nerves. My mom has had fibro for many years ( was FINALLY diagnosed after 25 years of pain w no diagnosis) after all of the docs she has seen I would think if it was something else they would've found it by now!!!!!

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So What Happened?

* I should add - I have had 3 different opinions, the final two diagnosing me with fibro. My first physician didn't believe in fibro....he says it is something else causing it. I was SO excited to hear that when he said it! He tested me for EVERYTHING under the sun. He found parasites in my stomach and we got rid of them with antibiotics. He said my pain should go away after that....it didn't. I was SO excited to think I may be "cured". I spent months convincing myself it was in my head and I was cured. I wasn't. So, I went on to see two other doctors who told me, yes, you have fibro, and it is a very real sickness. I have done extensive research on the topic and I really do believe I have this syndrome. I SO WISH it was something else, like the parasites or ANYTHING else causing this....but I don't believe it is. And neither do my 2 docs.

ETA: I do maintain a very healthy lifestyle, which probably only adds to my frustration. I eat a very balanced diet, lots of omega 3's, kale, spinach, all kinds of good stuff daily. I run/walk and I do yoga. I sleep at least 8 hrs per night. NOTHING helps. That is why I feel so frustrated......I am more healthy (by lifestyle) than anyone I know, but I feel awful all the time..

More Answers

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S.T.

answers from St. Louis on

Hi S.,

Doctors frustrate me to no end. I have Hashimoto's thyroiditis, which is also autoimmune. From all the research I've read, I seriously believe Fibro has its roots in thyroid/adrenal misdiagnosis and mistreatment. Most doctors swear by the TSH test (which is almost useless and seriously flawed) and go by ranges which are also seriously flawed. You may be hypothyroid and go "undiagnosed" for years because the numbers are within a range that is screwed up. Doctors don't care about your symptoms, only the numbers. Everything you describe sounds like hypothyroid symptoms to me.

I suggest stopthethyroidmadness.com and see if you fall into the misdiagnosed category. Thyroid controls almost every little thing in your body. And doctors really don't know how to treat it correctly. They will only suggest synthroid, which is a miserable and fake drug that the body doesn't recognize. I was on it for 10 years and felt like poo. Natural dessicated thyroid meds (from pigs) work wonders. I know several people on my yahoo thyroidless group that swear the real meds alleviated pain and allowed them to walk, stretch, and move again.

If your doc tested your thyroid and said it was "normal", ask for a copy of the numbers. Your TSH should be very close to 1, your Free T3 should be at the uppermost end of the range, and your Free T4 should be about midrange. But, he probably didn't test the Frees. Also, Vit D deficiency and B12 deficiency are classic Hashimoto's symptoms. As well as tummy/digestion issues.

I know it is all confusing and irritating. If you'd like to pm me and discuss anything, feel free. I've dealt with this thyroid thing for a long time, and it may be the key to feeling better.

1 mom found this helpful

J.H.

answers from San Antonio on

Check out HealingWell.com

I'm a member over there and you can talk with other people who have fibromyalgia. I'm shocked you're on so little medication. When I was diagnosed, I was immediately put on so many meds they made my head spin! I have since scaled back on the meds and am increasing natural remedies such as acupuncture, chiropractic work, massage, etc. It's not the end all to be all, but it sure helps a whole heck of a lot. Talking to others who understand what I'm going through helps as well.

If you decide to drop by over there, let me know. I'll give you my screen name over there, so at least you "know" someone there.

*hugs*

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S.R.

answers from El Paso on

My mom has had this since I was in 7th or 8th grade, so we're talking 15 years or so. I had never heard of this until my mom was diagnosed, and even when she was, there was not much out there about it yet. Unfortunately, it never goes away. My mom has her good days and her bad days. She has decent luck increasing the number of good days if she does low-level exercise frequently. I know it's awful and incredibly hard, but if you can push through and do some low-level exercise, it should help in the long run. The cold weather seems to aggravate her symptoms. I think my mom is on Cymbalta. She's been on it for quite some time, so she must feel it helps some, because she went through a LOT of different meds trying to find the right one that helped. She does NOT take her meds during the day, though, because they make her too drowsy to function (she fell asleep at a stoplight once).

I'm sorry you have to deal with this. Having watched my mom for so long (it took several years before they finally diagnosed her with it), I know it is hard. Keep your chin up, though, and just keep pushing through.

1 mom found this helpful
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D.F.

answers from Boston on

I have it and I have been on all sorts of meds that did not work. I take vitamin D from the Dr. I also take all the B vitamins daily. I walk and use light weights. I stopped taking all the meds the Dr.s gave me because the side effects were really bad. For pain I take motrin 800, tylenol. That just takes the edge off. The best tips I can give you is stay on your healthy diet and exerciser program and get plenty of sleep, keep the stress down , take brakes during the day and just sit and relax. Do not over do things and learn to say no I cannot help or do that today. If you have fibro fog keep a note pad handy to write things down. That is what I do. Facebook has several sites to choose from. Good luck!

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G.B.

answers from Oklahoma City on

My friend takes Lyrica and it's like night and day with her. She feels much much better with it.

I use ice on my painful areas and find much relief of pain with that. Slow stretches that will lengthen those muscle connections is also a good way to help make the pain less.

Not exercising at all is not a great thing to do. I suggest you look into the local Y to see if they have an arthritis exercise group. They are often low impact or might even be in water. The water will help reduce inflammation too.

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