How many members have fibromyalgia?

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02-26-2010, 09:33 AM

#131

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by mosquitosewgirl

I'm a massage therapist and treat many clients with Fibromyalgia. There are many things that really help and moist heat seems to be one of them. A lot of hot towels get used in my practice. However, we've found a clinic in Reno, NV that has some interesting and successful treatments for autoimmune disorders. Check it out at http://www.sierraintegrative.com/about.htm There are also clinics in Seattle and Connecticut (I think). What I tell my clients is to stretch slowly and breath deeply. Both Arnica gel and Sombra rub work wonders. Blessings.

Thank you so much for the information. I have never gone for any treatments, but moist heat sounds very comforting. I just push through pain to get things done too. My kids are all adults now, and this helps too. For me, the housework is the hardest. I do miss out on most activities that would be enjoyable, so I guess I cut out anything except the work. Didn't really think about that until just now, but it is true. Think I need to make some changes.

02-26-2010, 09:35 AM

#132

Tink's Mom

Super Member

Join Date: Oct 2008

Location: chicago, IL

Posts: 9,589

I have a flare up going right now...also one of those 3 day migraines...any ideas for the migraines? At the moment, I have abag of frozen peas on my neck....no pain pills, please...I'm on enough meds...

02-26-2010, 09:38 AM

#133

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by blahel

what are the symptoms of fibromyalgia? right from when you first notice something isnt right to when you flare up? exactly where does it hurt?

For me, it's hard to pinpoint symptoms because so many are intertwined with the lupus. I know I can't spend any time in the sun or I feel like I have the flu that evening, which I think is a lupus thing. I was having a lot of pain in my hip and that is what sent me to the doctor and prompted the lupus diagnosis. Then, I was referred to a rheumatologist who diagnosed the fibromyalgia. If I remember correctly, there are 7 or 9 points on the body that they touch, and if you have so many positive pain points, it's fibromyalgia.

02-26-2010, 09:45 AM

#134

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by penny doty

Quote:

Originally Posted by blahel

what are the symptoms of fibromyalgia? right from when you first notice something isnt right to when you flare up? exactly where does it hurt?

It hurts every were, some times its a building pain and some times it hits you from left feild. the only way I can describe it is it is like you are running a high fever ,without the fever every thing in your intire body is in pain, It affects people diffrently,they will usalley send you to a romatalogy for test. I hope I've helped with your quistion. Penny

Penny, what a great explanation. That is exactly what it is like. I see some people have flares, but I always feel this way, just to different degrees. I don't remember ever having a "good day." My hubby thinks I'm just cranky because he doesn't understand how much extra effort it takes to do ANYTHING. My family has never asked me about it and don't seem to want to know, so I keep it to myself. I think they figure if they don't acknowledge it, it doesn't exist.

02-26-2010, 09:48 AM

#135

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by Tink's Mom

Yes, I have Fibromyalgia...NOT fun...I had a big flare up, few weeks back that hit so bad and quickly that I ended up in the hospital....Then I was given something that caused an allergic reaction....It's been a really fun month....
Be careful with Lyrica...some of the side effects outweigh the benefits. I felt great on it for a while, but had to get off of it. Stress is a trigger...I've had this for about 10 years.

Oh, yes. I forgot about the stress piece of the puzzle. Every time I get stressed, I get a fever blister within 24 hours. Again, not sure if this is fibromyalgia related or lupus.

02-26-2010, 10:00 AM

#136

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by penny doty

Quote:

Originally Posted by grammynan

I've had fibromyalgia for 16 years. After years of suffering and spending most of my time on the sofa, I finally broke down and started taking Lyrica two years ago. Well, within 3 days if felt relief! I have gained quite a bit of weight since starting it, but the benefits definitely outweigh the side effects. I still have an occasional flare up, but they're tolerable and short lived. I would recommend it to anyone!

That medacation is just to expensive with out insurance.

Yes, medication is expensive without insurance. We were without insurance for about 3 years, so the only time I went to the doctor was when I needed antibiotics for sinus infection. I have taken other medications, but for about the last 4 years I have only taken Naproxen for the pain. I also take fluoxetine (Prozac), amitriptyline to help get 7 hours of sleep, propranolol to help ward off migraines, blood pressure medication, and dicyclomine for IBS. Sometimes it is difficult to concentrate and remember things too. I have to write lots of notes and make lists (then I forget where I put them lol). I also have degenerative disc disease in my spine and have had a cervical disc removed and replaced with a bone graft from my hip. Thank you all for sharing. One thing I will add, I tell people I'm somewhat of a germaphobe, but I think it is just adjusting to protect myself. My doctor recently said I was "walking germ magnet." I avoid large groups of people and carry the antibacterials in my purse at all times. Then, my fingers dry out so bad that they crack and bleed. Another that is related to these illnesses is Sicca syndrome, meaning extremely dry eyes, mouth, throat, skin, etc. I'm supposed to use preservative-free eye drops every hour during the day. Sorry to have such a long post, but I don't get to talk with anybody about this. Thanks for bringing it up. Maybe we can be of help to each other.

02-26-2010, 10:04 AM

#137

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by Honey

It's been about 15 years since mine was diagnosed. For me the pain was mostly in the big bones of my arms and legs. It felt like someone was ramming a red hot poker through the middle of them. About 4 years ago I went to a Dr. of alternative medicine. He is a real MD, just doesn't stay inside the box and definitely does not believe in a pill for everything. He did a lot of saliva tests and found out that my body was totally messed up. The only thing that is relevant, however, is that he started giving me vitamins that were put together just for me. I also got an IV once a week for six weeks that was a combo of mega doses of c and d along with some other vitamins and minerals. The bottom line is, I have not had an episode of fibro since. Once in a great while I will get a little achy, but that is about it. A nice warm bath or shower and a couple of Tylenol and I'm good to go with no pain. I'm not saying this would work for everyone, but it sure did for me.

I'm so glad you found someone who could help you. Sounds like a wonderful doctor you have.

02-26-2010, 10:09 AM

#138

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

[quote=blahel]

Quote:

Originally Posted by I come to the sea to breathe

Quote:

Originally Posted by penny doty

Quote:

Originally Posted by blahel

what are the symptoms of fibromyalgia? right from when you first notice something isnt right to when you flare up? exactly where does it hurt?

My
dd dr. told her that crohns disease is also connected with fibro. i have had fibro. for many years, i use to think i kept getting the achy flu, but finally was told i had lupus, than fibro, even tho i test postive for lupus. my legs and hips are really painful, and i have started noticing that when i shake hands that sometimes it really hurts. good luck.

For me, it hurts all the time, but standing in one place is killer! I feel a little better walking than standing. But walking hurts in my spine from the degenerative disc disease. I have a headache all the time and ringing in my ears and head that is louder than any TV, voice, etc. On the other hand, losing weight and strengthening muscles is helpful, but it's hard to get motivated to exercise when you already hurt too bad to try, and knowing you are going to be miserable for the next 3 days.

i too get very achy all over at times i take panadeine forte at night to sleep. My legs and feet are the worst but it isnt as painful as some of you seem to have it. It is just achy. I have mentioned it to the doctor but he didnt seem concerned. Does it hurt more when you walk or is it just achy?

02-26-2010, 10:12 AM

#139

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by sewbaby

I found out about having fibro from having an attack, I was tested years ago for RA, it runs in the family lucky me. Told that I tested positive and found out recently that it was Lupus not RA , not that it makes much diffeence, in my case. Motor vehicle wreck 15 years ago where I broke every thing in my upper body except by back,vehicle landed on my chest. So all in all fibro, RA, lupus, COPD(collapsed lungs in mva), as you all know some days are good some days are not. But I several interests in the sewing field so if I can't do one I almost always am able to do another. For me sewing is very relaxing and that is KEY to pain control!! relax if you can and enjoy life to your full potential even on those bad days.

I'm so sorry about your accident. It sounds like it was horrific and that you are blessed to even still be here. I'm glad you are and sounds like you are dealing with the issues with a positive attitude. That help a lot too.

02-26-2010, 10:14 AM

#140

BrendaB

Super Member

Join Date: Jan 2010

Location: Muscatine, Iowa by way of West Virginia, Washington State, and Montana

Posts: 1,130

Quote:

Originally Posted by fabric-holic

Quote:

Originally Posted by SherriB

I don't have fibro but I do have lupus. I was diagnosed several years ago. I mostly have joint pain and sensitivity to the sun. My hands seem to hurt the most, especially the thumb joint closet to my hand. There are days when I wish I could just "pop" off the painful part and put it back when it finally quits hurting. I dread the day when it gets to bad to sew.

OMG! You described exactly my symptoms! I went to a rhuematologist in Jan. and he drew tons of blood but it all came back normal, according to his nurse. I wasn't hurting that day so maybe it affected the blood results. I almost couldn't function last summer (too much sun?) but over the winter I've only hurt maybe 2 or 3 days each week. My toes hurt too...I thought I'd broken several of them.
Right now my wrists and thumbs are so sore I can't pull the covers up at night, hold a heavy glass, etc.
I'm almost sure I have Lupus, although he didn't seem convinced.
After reading the posts I think I have Raynauds too. My fingers go white in the cold and hurt like crazy even when they're warming up.
Are all these different syndromes related?
I mean are they all auto immune? (Fibro, Lupus, Raynauds, Sjongrens, etc)

The easiest and best answer to your question is "yes."