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Posted 3/13/2012 9:49 PM (GMT 0)
Hi all - I'm reposting this here, from another thread where I posted less visibly ... Thanks, Acheybody, for your suggestion :)

Hi everyone - I've just joined this forum and can resonate and empathize with many of the comments posted. I was diagnosed with Fibromyalgia about 2 years ago, when my previous doctor finally retired and I found a new one who sent me to a rheumatologist for inexplicable allover pain and extreme fatigue. Prior to that, I was experiencing pain for years before finding out what was causing it. What a relief to finally get a diagnosis!

I have been on several medications since my diagnosis to try to alleviate the pain, to no avail. Either they didn't work, or I couldn't tolerate the side effects. The worst one for side effects, for me, was Cymbalta. Some people have irritable bowel with Fibromyalgia, but I have irritable bladder so the Cymbalta was affecting it 24/7 - running to the bathroom every half hour or 45 minutes was no fun during the day, and even worse at night. I was already into interrupted sleep because of Fibro pain and restless leg syndrome, but the bladder issues made it impossible to get even a couple of hours in. I'm wondering if anyone else has experienced irritable bladder with their Fibromyalgia, or restless leg syndrome? I also can't tolerate lukewarm to cool water on my skin. A couple of months ago, I had to see a doctor at a walk-in clinic for something else when my regular doc was away, and I had to give her my medical history. When I said I have Fibromyalgia, she suggested I swim for exercise. When I explained to her that getting into a pool and experiencing that temperature change brings on more pain - which being in the water gradually eases it - but when I come out of the pool, the temperature change wreaks havoc with my fibromyalgia pain - she just didn't get it. I told her, I'll stick to my hot showers, thanks and she still insisted I go swimming.

Then I developed TMJ, but didn't know what the heck it was ... it started last June and was agony. I went to my dentist, who said it wasn't tooth-related, then to my doctor who checked it out by pressing on the jaw muscles (YOWCH!!) and diagnosed it. He recommended physiotherapy, which I went for several times and it subsided. I find that it reoccurs after I chew toffee or hard candy, or a chewy chocolate bar or peanuts - sometimes granola cereal will set it off. I'm still going for physiotherapy to deal with an old ankle injury, which my previous doctor neglected to deal with and which this new doctor is spot-on about, so the exercises my PT prescribes for that issue, are also good for Fibromyalgia. Despite the gentle exercising and using a recumbent bike every second day for 6 minutes (that's all the bad leg can tolerate right now), I am fatigued beyond belief and sore all over. I can barely get thru household chores most days. Has anyone tried alternative medicine (naturopathy, homeopathy?) for Fibromyalgia, and if so, has it worked? Thanks for reading ... :)
Posted 3/13/2012 10:19 PM (GMT 0)
Hi there,

Welcome to the fibromyalgia forum. I am so glad that you have joined us and posted an introductory thread. That is wonderful.

Fatigue is hard. I have been though it. I take stimulants to get me though the day. Though others have other things that they do.

If you want to go the natural way, gensing might be a try. I hope that you find what works for you. It is a journey to say the least.

Have a wonderful day...

Hugs, Karen
Posted 3/13/2012 11:28 PM (GMT 0)
Thank you, Karen, and hugs back to you! If you don't mind sharing, what kind of stimulants get you thru the day? Ginseng sounds interesting, will check the health food store next time I'm out.
Posted 3/14/2012 1:18 AM (GMT 0)
Hi
I had TMJ, the headaches, couldn't eat. Potato chips were killer for me. I had a closed lock, which means when my jaws would lock up, my mouth was closed. I had the bite plate, wore out 2 of them. Just chewed right through them. I finally had open surgery, 4 hours on the table. Couldn't chew for 2 months after, but sooooo worth it. I really had a great surgeon, I'm fine now. Its been about 15 years.

I do have restless feet. I take 1 Flexeril at bed time, keeps everything quiet, and I don't wake up feeling like I've been hit by a truck. I also take 800 mg Vit D3. That has really helped me a lot! I had to ask my pain doc for the specific blood test for that.

I can't take Cymbalta, wish I could, but anything in that drug class makes me feel like an elephant is sitting on my chest.

Good Luck
Spookiesmom
Posted 3/14/2012 7:49 AM (GMT 0)
Welcome angel feather - all your symptoms you mention are classic symptoms of fibro. Some of us have more then others. I hope you had other test done to rule out other diagnoses. The best thing you can do is educate yourself on fibro. I came to this site about a year ago and I learned so much. My health has improved greatly. I read other post and ask questions about treatments. I started to try a few things and I liked the results. I shared them with my Dr. Because she wasn't up to date on what others were trying. I try to keep my treatments very simple and almost natural. I have only tried accupuncture, but I got no good results. I do lots of heat, light excercise, supplements, subutex and see a therapist. This is what works for me. You will find out we all have different treatment plans. Hopefully you will find out what works for you soon.
Posted 3/14/2012 11:52 AM (GMT 0)
Hi, Angelfeather, and welcome!  I"m so glad you found us and joined in!  As AKAngel said, everything you mentioned is a symptom of fibromyalgia.  We get so may weird symptoms and it doesn't seem like one illness could cause all of these, but it can.  We do have to be careful, though, because it's so easy to put any new symptom off as being fibro and it could be something else.  For example, when I started heart palpatations, I had that thoroughly checked out even though that can be a symptom of fibro. 

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms and A Thorough Explanation of Fibromyalgia.  You just might see yourself there.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon!

 

Sherrine

Posted 3/14/2012 3:59 PM (GMT 0)
Hello & good morning everyone!

I'm new to this site. I was diagnosed with fibromyalgia in 2007 and continued to work as I was a single parent and my check was our only way of income. In 2009 my health become worst and I noticed I would fall ill with bronchitis to the flu like symptoms almost every 6 weeks. My body was in pain everyday but that was my day everyday really since 2004 but I wasn't diagnosed until 2007. I'm so glad I have found this site!! Winters are the worst for me and I have controlled my FM pain thru medication and excercise( walking ) on the beach.
Posted 3/14/2012 9:30 PM (GMT 0)
Oh wow, thank you everyone so much for your kind words and empathy. Experiencing all your empathy makes me teary. Being without support for so long is emotionally difficult so I appreciate you all, thank you again.

Yes Sherrine, I have read Fibro 101 and about 85-90% applies to me. I would add irritable bladder to the list, as it is listed as a symptom of Fibro elsewhere, only I forget now where ... fibrofoggy sigh ... There was a brief time when my new doc thought I might have "polymyalgia rheumatica" but the rheumatologist was convinced it's the demonic Fibromyalgia. AKAngel, you're right about getting tested to make sure of the diagnosis. My previous doc thought this was rheumatoid arthritis, so I've had blood tests to rule that one out, and then this new doc sent me to a rheumatologist. I've also sent away to John Hopkins Medical Centre for Fibromyalgia information to give to my in-laws, because they thought I was just faking to stop working (!! like, who wants this disease, and who would want to fake having it??!) So after my father-in-law read the Fibromyalgia paper from JHMC, he said, "oh! hey! maybe I have this!" No words could adequately describe what I felt in that moment ... but you have to consider the source: this comes from the same man who - when I initially started feeling the effects of Fibromyalgia several years ago and put on a few pounds because exercising was impossible with so much pain - would make nasty comments about my being a "Big Girl" now. When I had difficulty getting up from the dining table and limping, made my way to the kitchen and back to the table again, there he was - imitating my limping and pretending he was a cripple. I asked him, "are you making fun of me? shame on you if you are!" and I haven't had any more incidents since then, but the memories are hurtful and I can't look at him without remembering those emotionally abusive tactics he used. My husband is great with me - thanks be to God! - wonderfully supportive and a super helpmate, a real partner, but when it comes to confronting his family about their abusive remarks, he won't do it for fear it will cause damage. So if I don't stand up for myself with these people, no one else will. You learn. Sorry for the tangent ...

AKAngel, I have been taking acupuncture treatments for my leg for 3 months now, along with physiotherapy, and it's hard to say whether it really helps or not. I figure I'll stick with it though, since it can't hurt, yes? Like you, heat and light exercise works for me, but I'm not familiar with subutex? Can you tell me more please?

I am now taking Gabapentin and I feel horrible on it: sluggish, tired (like I need more of that, hey?), and at night instead of drowsy, I feel like I'm wide awake on a caffeine high - so no restorative sleep, only hard "like the dead" sleep when I do manage to eventually fall into one.

Yayaq mentioned winters are the worst, but I also find that any kind of extreme temperature changes wreaks havoc with my Fibromyalgia - yet, I have been x-rayed and tested for arthritis and don't have that to contend with (yet, anyway). Does anyone else experience worse Fibro symptoms with weather changes?
Thanks for reading :)
Posted 3/14/2012 9:48 PM (GMT 0)
Hello, Yayaq, thank you for sharing and welcome - I'm a newcomer myself and I so much appreciate this site and the kind, wonderful people who are co-sufferers with us. Lots to learn here, and I hope your journey with us will help with some of your healing. A part of healing comes from giving and receiving emotional support and I'm glad we have both found our way here :)

When I started working at one of the hospitals here I would get sick at least five times a year with a respiratory infection that I always needed antibiotics for. Then I had to work thru my own guilt feelings for missing so much work, while putting up with questioning comments from co-workers that put me on another emotional spin. It's tough to be ill in this world of ours - there is very little compassion, empathy, sympathy or understanding, unless someone has gone thru a similar experience. I hope that you will find this site a safe haven to turn to. I know, I have :)
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