Wellness

[Suziepeach]

Rtmom, I was diagnosed with fibromyalgia a few months ago & it's different for everyone..

My Doctor is acceptionally wonderful and she understands- if anything both of us are learning together as we walk this path... Check out this website, it's full of good information as I refer to it and my Doctor quite often... Your Doctor is your best bet for information- give he or she a buzz or email and let them know what's going on.. Fibromyalgia is being recognized more and more.. I loathe some days but then some are ok.. and that's just ok... It has affected my eyes, sinuses, which has caused dry eye syndrome... Fibro is a real thing...

http://www.fibromyalgia-symptoms.org/fibromyalgia_skin_complaints.html

Advice on this BB is a good thing but you have to talk to your Doctor about this- it could simply be the fibro or dry skin from having the heat on....I have the itching and some days like crazy - like I said read about it and talk to your Doctor... I do not have diabetes, hormone or thyroid issues either.. Your diagnosing Doctor is your source for good information!

[Suziepeach]

If I might add, I discovered a book titled "Fibromyalgia, the ultimate guide to managing your pain and reducing your suffering" by Robert Price... I downloaded mine onto Kindle from Amazon... It's a short read but full of valuable information. I still refer back to that when I am having a ragged out day but the good days are starting to out weigh the bad days...

[okiebug]

Peachysue, thanks so much for the references. I bookmarked the website and will definitely read it. I now have a PC that understands fibromyalgia more than most, and he is willing to learn.

[Suziepeach]

On 12/10/2014 okiebug said:

Peachysue, thanks so much for the references. I bookmarked the website and will definitely read it. I now have a PC that understands fibromyalgia more than most, and he is willing to learn.

okiebug, it's full of good information- I didn't have a clue until I started searching and my Doctor, like yours, is willing to learn more about fibro too... she sees several fibro patients & anything I can do to maybe make someone else in my boat feel better, that makes me happy.. Have you read about some taking Muxinex to help the pain.. who knew that some, as myself, can find relief from the guaifenesin... I refuse to take Lyrica so between 600-1200mg of Mucinex and my small amount of Xanax a day I get by.. See I have neuralgia on my left side due to something else and all my nerves on some days are happy happy happy, LOL .. I just go with it and make myself do stuff... crazy huh?

OHHHH let me add, I am also under the care of a neurologist and neurosurgeon for another matter so they are aware of the fibro... thought I needed to say that someone wouldn't say my PCP doesn't know anything... but Fibromyalgia is a real thing & I truly feel bad for anyone going through the pain, discomfort, depression, and all that stuff... it's just bad!

[lavendar]

Fibromyalgia often accompanies other autoimmune diseases. Thirty five years ago a bright young rheumatologist (I still see him and he's still bright!) dx me with fibrositis (that's what they called it then) secondary to Crohn's disease.

Eventually I was dx with Sjogren's syndrome and another autoimmune disease. This isn't the place for my medical history so I'll stop here.

I did see a Lyme literate doctor. I'm fortunate in that I live in the Boston area and there are many specialists and subspecialists here.

I have a question for Peach: why don't you want to take Lyrica? I'm taking it very successfully for intense neuropathic itching on my pelvic floor and vagina. The doctor prescribing is a neurologist at the Mass General nerve injury unit. He is very cautious and takes very good care of me. I'm concerned there's something I'm not aware of. We started with a very small dose and worked up. I know some people can not take it. I react to many meds and feel fortunate I can tolerate Lyrica. I'd been on many other meds before it that I was glad to get off of.

I research everything: I had to get my own dx for interstitial cystitis. This was before personal computers and I spent a year at the Harvard Medical School library.I was an English teacher with no medical background. I got so good at it that I ended up working for the Crohn's & Colitis of America Foundation doing their writing for the lay person for ten years.

A new dx can be first a relief and then frightening. If there is a support group near you you might want to go to a meeting. Some groups are good, some aren't.

Any symptom that is disturbing should not be self treated. See the doctor who dx fibro and then possibly a dermatologist. I have a lot of skin issues but they are related to the Sjogren's, not the fibro.I saw three derms before I found one interested in my problems.

Take care of yourself. Eat well and if you're not sleeping well tell your doctor.

[okiebug]

Lavendar, I don't know about Peachysue, but because of other neurological issues, I can't take any SSRIs, so those fibromyalgia treatments are out for me. I also have to be careful with guaifenesin - only occasionally and for bronchial disorders. I'm under the care of a neurologist and a pain management doctor, both of whom are familiar with fibromyalgia and my other medical issues.

[Suziepeach]

lavendar, without divulging too much neurological issues, I declined the Lyrica because the side effects scare the bejeepers out me... I started with the Mucinex a couple weeks before my final diagnosis and it was doing the trick. My PCP said if ever the day comes I felt I needed to try it, I could but she respected my denial.. Right now I am keeping it under control- the Xanax relaxes my nerves and that alone makes a difference. I am very aware of side effects as I've tried other things and I went off the chart with reactions... Is it fair to say I am drug sensitive? Heck, I had to cut my Xanax dosage down to the smallest available as the strength above was causing my fibro fog to be even worse. Right now I feel balanced but I do have the happy nerve twinges, IBS symptoms/nausea... light sensitivity in my eyes so bad I have to wear sunglasses in the house... it all adds up cause fibro can cause eye flashes and spots- I mean back in April, when it all started, I was checked for a torn retina... there was none but again, I am stubborn and refuse to give in.. LOL Now I am off my podium but fibromyalgia is absolutely incredible to read about..

[lavendar]

okie and peach: of course anything with these diseases and meds makes sense.

I reacted to every SSRI I took but for some reason could tolerate Lyrica. Go figure. I also did well on Neurontin for a few years but it stopped working. I use Valium vaginal suppositories to relax the pelvic floor spasms. They work better than oral use and very little is absorbed into the bloodstream. They are much more expensive than pills but the less meds in me the better.

I am also very drug sensitive.I've used liquid versions when available to get the smallest dose possible and cut tablets into quarters. I'm sure you know the routine.

I'm glad you're seeing a neuro. I've gotten the most help from neurologists (and my still bright rheumy.)

I'm also very proactive. I think those of us who are will ultimately make a difference in understanding this disease or combination of diseases.

[Yesyesyes568]

It's just the most Incredible place to come to. This is so helpful to me, I too have this fibromyalgia. I Am on lyrica and neurontin and no problem with them. But I have sjrogens ( dry mouth) and I take salogen for that which the most Difficult medication to get Any Dr to give me in my area and to Continue to give me. I also wanted to ask if anyone here gets these strange electrical feelings (I'm not sure if their restless leg syndrome) but the Dr refuses me medication cos I'm on so much. Do you get this experience too?"

[Suziepeach]

Maggie, I have those little zaps from time to time. . Just nerve twinge as fibromyalgia is basically over active nerves. Mine happen in the fibro trigger points and basically wherever they want to go.. strange how that happens. On the website I put above, check that out.. it's chocked full m of information but still always check with your diagnosing physician.. I am learning something new almost every day about fibro..