Fibromyalgia

[Jena]

Quote:
Hi Mahonri,

Good to read your post. I know you have mentioned before your issue with hives, and I found it really interesting. I get them everywhere, and they drive me crazy.

All of my questions concerning this have remained a mystery as far as the medical profession is concerned. I never had any of this when I was younger, but became allergic in my 30s, always had an allergy to bee stings but suddenly I got contact allergies, and then it has progressed over the past 20 years. Became severe after I had a TIA in 2001, which was precipitated by a sudden loss of potassium. No explanation given for this either. Then I had a run of viral infections, ENT and bronchial and bang it has been a real problem since then.

But I am so interested in your idea that it is connected with thyroid. My son has Marfan's Syndrome. Recently diagnosed. I also have raised thyroid levels, which we were surprised at, as my son is very tall and slim like his dad. ( I am short and stout) ergo confused about the thyroid link, but interested. My mother was also diagnosed with Fibromyalgia, very late in life by an enlightened doctor, after years of dreadful pain.

Now they are also telling me I have arthritis, which is understandable, but is also connected as you say. I can explain that by past accidents and the effects of age, but I still have no explanation for any of the other effects.

I agree that diet and nutrition are so important, and try to be as healthy as possible. That was part of the drive for garden eggs and growing food.

I know so many people locally who have similar problems, and get little or no help at all here. let's hope attitudes change some day.

Many thanks.

Jena.

 

[NurseELB]

I have people at work convinced that I do the fibro fog thing just to be funny. I refuse to tell them I have FM because of the stigma in the healthcare field, so I tell them It's like a nutty professor kind of thing- "my mind is just too fast for my mouth" (if only they REALLY knew!)
Ferngully- Have you ever been to the desert? If so, do you notice a difference between the dry/moist heat? When I lived in So California I was almost immobile in the heat. I actually offered to suffer the cold up here in the NW instead!

 

[Ferngully]

nurseELB
I have not had the opportunity to do desert heat. I have lived in several states with the military but never the desert. And now......ha I am not(can't) traveling anywhere.

Fibro fog can be funny at times. Isn't so great when you are trying to chart though.

 

[NurseELB]

All I can say is thank god I work where there is computer charting!!

 

[AllChookUp]

Prayers for all of you who have this. I worked with a woman that has it. I know what a rollercoaster it can be. I have a lot of respect for those who deal with it as best they can.

 

[EweSheep]

I have not been diagnoised with this disease because my own family doc said there is not such a thing like that and he would give me some pain meds and said its all arthritis. yes I do have it but its only mild. Only heat, massages helps a bit along with warm water swimmings. Sometimes it hurts so much that I felt like I had done a 100 mile endurance running, so sore and didnt want anyone touching me even with my dear daughter wanted to hug me!

And Medicare wont cover this type of any care without a referral which I could not get it from my own doctor and only doctor in town that would take me.

Its no laughing matter dealing with fibromyalgia and I have many friends that has it and we all made comparison notes and they ALL said I do have this disease. So I'm one of those patients that falls thru the cracks.

 

[crazyhen]

ewesheep you need to see a rheumatologist. This disease is recognized by the group of dr. and social security now. I have some friends who qualified for disability for it. I am a mild case but have many of the symptoms just milder.
I also have low thyroid, diabetes, the itches, arthritus, osteoporosis etc. Right now the Dr. is checking for celiac disease. That would also explain a lot if I have it. I hope you get some help soon. jean

 

[sundance]

For me the only thing that helps at all is the natural apple cider vinegar. i like raspberry tea so I just dump some in every day, I usually use a bottle a month and the local Kroger is the only store that carries it locally, But they do carry a lot of natural food, and I hit Krogers every month for my bottle of Natural ACV. I check the bottom of the bottle to be sure it has lots of the "mother" in it before I buy it. marrie

 

[turney31]

I just wanted to say THANKS to all you wonderful caring friends! I have found through several of your posts a few new avenues to try. I find it therapeutic to talk to understanding kindred spirits. I am brought to tears by the people who don't have it but send hugs, prayers and best wishes. I am proud to be a part of the BYC family! Micah

 

[spook]

I have been blessed with PCOS, Ankylosing Spondylitis, Psoriatic Arthritis that is of the connective tissue (including lungs, heart) also deal with Fibromyalgia.

I now am on 1600 mgs of Remecade every 5 weeks- IV, Methotrexate, Cymbalta, Doxepin, wellbutrin and Gabapentin 600 mg 3 times a day.
Getting tired of the pain even with big drugs is interesting. How can one person hurt so dang much?

I have found that having my feet tapped, seriously, helps to releive the pain in my legs, hips and back. It is an amazing relief. We also use a lot of Arnica Massage oil by Weleda. Its nice and relaxing.
My CRP still runs at a 3.8, I began a year ago at a 7.9, they thought I had a heart attack finding that all is clear, it was arthritis.
My hands and feet are pretty free from blisters or plaque with the medications I use, yet I still have flare ups.
Dietary changes were years ago for my psoriasis (planter/palmer pustular) as I found that eating preservatives trigger my ........ everything!
You must keep working towards the goal of pain control with a doctor that is serious and is willing to work with you. I have been through many drugs, some ok, some no way. Its funny how I had been taking Cymbalta at night and my doc told me to take it in the morning and it was like someone flipped a switch. (I am not telling any of you to do it my way!!!! Please work with a professional)
I think if I didn't have the cats inside along with BYCers like you guys, and the chickens outside, I would be depressed- if you could imagine any moods after all those drugs! ha ha.
The worse thing I hate is the changes in the weather, rain hurts more then snow (go figure) and you have no choice but to get up and move!
Good luck to you all!!!