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Super Contributor
Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/21/2014 Madisson said:
On 7/21/2014 addiegal said: I am probably a firbo sufferer, as I have the symptoms, just haven't been diagnosed officially. Last evening I was standing in the entrance to a restaurant and was too near a door...well a young strong teen thrust the door open into my mid back...man It hurt! And I am feeling achy today...it takes so little doesn't it? Now I am not saying this is a serious injury, it's not, but just that we react differently than normal folks! I sometimes feel like such a wimp! Google magnesium foods and supplement extra with food! Then you can avoid (hopefully) extra pills! Magnesium tablets are very big and hard to swallow.

Addiegal, Sorry to hear about your back. Hope it feels better soon. Sounds like you need to see a good rheumatologist to see if you have fibro. It certainly sounds like you have the symptoms. Hope you have a great day!

I agree with Madisson. See a rheumatologist. Just getting the "official" diagnosis made me feel better!

Michelle

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Registered: ‎07-05-2010

Re: Fibromyalgia Sufferers...A Place to Meet

For those wanting to take the magnesium supplements but can't handle the huge honkin' pills, you might want to check out "CALM," which is a granulated powder you can stir into tea, juice or water. I just use an ounce or 2 of warm water to get it quickly dissolved & send it down the hatch, to get it over with. Then I drink something more enjoyable, lol. Great supplement for those suffering with Fibro pain. You can find it on the rain forest site beginning with A.

http://www.amazon.com/Natural-Calm-Raspberry-Lemon-16/dp/B00BPUY3W0/ref=sr_1_1?ie=UTF8&qid=14059563...

SerenityNow!
"Be as a bird perched on a frail branch that she feels bending beneath her; still she sings away all the same, knowing she has wings." ~Victor Hugo
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Re: Fibromyalgia Sufferers...A Place to Meet

I believe both my daughter and I have fibromyalgia, she along with CFS, and me along with all of my stuff. I think once one gets any kind of autoimmune disease, one is very susceptible to getting more. Once the body loses its ability to fight off disease, it's pretty much over. Trying to control the symptoms is the best one can do, and I don't know anymore if that's with meds, food, exercise, because they're all out there and pretty much none of them work.

I don't care for me anymore, but I'm devastated for my daughter, who should still have a long life to live. There are so many reasons why she lost her health, including her toxic work environment (a hair salon for over 30 years), her toxic marriage and toxic divorce (still going on), and all the rest of what she's been through.

She has researched so many things in the last year it's mind boggling. The last doc she went to has diagnosed (if that's possible) CFS. They don't really know what's wrong with her. But the symptoms of fibro are definitely there for both of us.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
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Posts: 299
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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/21/2014 Ford1224 said:

I believe both my daughter and I have fibromyalgia, she along with CFS, and me along with all of my stuff. I think once one gets any kind of autoimmune disease, one is very susceptible to getting more. Once the body loses its ability to fight off disease, it's pretty much over. Trying to control the symptoms is the best one can do, and I don't know anymore if that's with meds, food, exercise, because they're all out there and pretty much none of them work.

I don't care for me anymore, but I'm devastated for my daughter, who should still have a long life to live. There are so many reasons why she lost her health, including her toxic work environment (a hair salon for over 30 years), her toxic marriage and toxic divorce (still going on), and all the rest of what she's been through.

She has researched so many things in the last year it's mind boggling. The last doc she went to has diagnosed (if that's possible) CFS. They don't really know what's wrong with her. But the symptoms of fibro are definitely there for both of us.

Ford... I hear ya. It is the worst when it is a child. I don't know if you or she have been tested for Lyme disease. It hit my family hard, years ago. After so many Dr.'s and the "experts" telling us she was faking her symptoms (she was in a child at the time), we found the right Dr, and the right meds. My son had it too, but not as severe as my daughter. Anyway, my rheumotolgist tested me. It sometimes does not show up on a test. I am so sorry your daughter is going through such hard stuff... it is heartbreaking for a mom to see. I know she will get better. Just keep trying with Dr.'s etc, and don't give up. There is someone out there who can diagnose you and your daughter.

I get discouraged too, since not exercise nor vitamins make me feel better. It is beyond frustrating. Advil helps but it is not good for my stomach. Ugh!

Michelle

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Posts: 299
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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/21/2014 SerenityNowMyndi said:

For those wanting to take the magnesium supplements but can't handle the huge honkin' pills, you might want to check out "CALM," which is a granulated powder you can stir into tea, juice or water. I just use an ounce or 2 of warm water to get it quickly dissolved & send it down the hatch, to get it over with. Then I drink something more enjoyable, lol. Great supplement for those suffering with Fibro pain. You can find it on the rain forest site beginning with A.

http://www.amazon.com/Natural-Calm-Raspberry-Lemon-16/dp/B00BPUY3W0/ref=sr_1_1?ie=UTF8&qid=14059563...

Thanks...yes, those pills are not doable for me.

Michelle

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Posts: 2,007
Registered: ‎04-05-2010

Re: Fibromyalgia Sufferers...A Place to Meet

Hello, everyone. Madisson, thanks for starting this thread. I'm glad to see it and hope it continues. Mishell and addiegal, sorry for the stress and pain you are going through.

I was diagnosed with fibro 29 years ago before much was really known about it.

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Posts: 94
Registered: ‎03-09-2010

Re: Fibromyalgia Sufferers...A Place to Meet

Thanks for introducing this subject! I have had fibromyalgia for 10-15 years. My mom, her sister and my grandmother all had it. Did not have this name when my grandmother was alive - I think it was referred to as fibromyitis, but I could be very wrong.

I am on Cymbalta, Lyrica, Tramadol, in addition to many other meds for HBP, etc. I am frequently in a lot of pain, stiffness, along with the accompanying depression. My despair includes the fact that I never feel "good", and the fact that I rarely can enjoy time out with friends if it includes walking or even a short vacation.

I am also on c-pap. My knees could use replacing. And I have looked into and am a candidate for bariatric surgery. According to my PCP and rheumatologist, losing a great deal of weight would get me off of "90%" of my meds. Surgery would be 6 months out because here you have to jump through a million hoops first. That feels so overwhelming and has kept me from making even a first step. I was approved by insurance two years ago and just froze. I also fear a huge fibro flare if I do go ahead with surgery. I am divorced and have no living relatives, except a very loving flat-coat retriever.

I look forward to reading about the experiences you have all been through. Kiss

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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/21/2014 sneef said:

Thank you for starting this new Thread, I have Fibro and CFS for the last 18 years. I hope you find out if your ribs are fractured or popped out of alignment. I know a couple of years ago I thought my ribs were fractured but I hadn't suffered any injuries, so I went to my Chiropractor and she popped my ribs back into place. I wont even get started on spasms for now. good luck at appointment.

Hi sneef. Welcome. I know that there was a fibro thread a long time ago. I am glad that Madisson started this thread today. Great support system!

Michelle

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Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/21/2014 Windycity said:

Thanks for introducing this subject! I have had fibromyalgia for 10-15 years. My mom, her sister and my grandmother all had it. Did not have this name when my grandmother was alive - I think it was referred to as fibromyitis, but I could be very wrong.

I am on Cymbalta, Lyrica, Tramadol, in addition to many other meds for HBP, etc. I am frequently in a lot of pain, stiffness, along with the accompanying depression. My despair includes the fact that I never feel "good", and the fact that I rarely can enjoy time out with friends if it includes walking or even a short vacation.

I am also on c-pap. My knees could use replacing. And I have looked into and am a candidate for bariatric surgery. According to my PCP and rheumatologist, losing a great deal of weight would get me off of "90%" of my meds. Surgery would be 6 months out because here you have to jump through a million hoops first. That feels so overwhelming and has kept me from making even a first step. I was approved by insurance two years ago and just froze. I also fear a huge fibro flare if I do go ahead with surgery. I am divorced and have no living relatives, except a very loving flat-coat retriever.

I look forward to reading about the experiences you have all been through. Kiss

Windycity.. Hi! Yes...so glad that Madisson started this thread. She posted yesterday and I think it was just fate since I really was going through some stuff I didn't understand!

I understand how you feel "frozen" with getting all the stuff together for the surgery. And I hear you about your fears about surgery triggering more fibro symptoms. I had emergenccy gall bladder surgery a few years ago, and I really think that triggered the whole Fibro thing. Maybe just take one small step at a time, and just let things flow. Don't get too overwhelmed if you go one minute at a time. I would say you have a very special companion living with you.

Michelle

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Posts: 12,997
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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/21/2014 Mishell5 said:
On 7/21/2014 Ford1224 said:

I believe both my daughter and I have fibromyalgia, she along with CFS, and me along with all of my stuff. I think once one gets any kind of autoimmune disease, one is very susceptible to getting more. Once the body loses its ability to fight off disease, it's pretty much over. Trying to control the symptoms is the best one can do, and I don't know anymore if that's with meds, food, exercise, because they're all out there and pretty much none of them work.

I don't care for me anymore, but I'm devastated for my daughter, who should still have a long life to live. There are so many reasons why she lost her health, including her toxic work environment (a hair salon for over 30 years), her toxic marriage and toxic divorce (still going on), and all the rest of what she's been through.

She has researched so many things in the last year it's mind boggling. The last doc she went to has diagnosed (if that's possible) CFS. They don't really know what's wrong with her. But the symptoms of fibro are definitely there for both of us.

Ford... I hear ya. It is the worst when it is a child. I don't know if you or she have been tested for Lyme disease. It hit my family hard, years ago. After so many Dr.'s and the "experts" telling us she was faking her symptoms (she was in a child at the time), we found the right Dr, and the right meds. My son had it too, but not as severe as my daughter. Anyway, my rheumotolgist tested me. It sometimes does not show up on a test. I am so sorry your daughter is going through such hard stuff... it is heartbreaking for a mom to see. I know she will get better. Just keep trying with Dr.'s etc, and don't give up. There is someone out there who can diagnose you and your daughter.

I get discouraged too, since not exercise nor vitamins make me feel better. It is beyond frustrating. Advil helps but it is not good for my stomach. Ugh!

Michelle

My daughter has been tested a number of times for Lyme Disease and needs to be tested again. She takes no meds at all. When she did, the side effects nearly killed her. I only take three meds myself, and I have RA, osteoporosis (with ten compressed vertebrae), Sjogrens, lactose intolerance, IBS, hypothyroidism (which is the first autoimmune disease I was diagnosed with), and now cataracts. I probably have fibro, and my ribs are chronically out of joint and have been for many years. I know how to push them back in myself now. My shoulders go out of joint too, and all of my fingers are crooked. I feel like a house that somehow stands with a roof and a floor, but no walls. I have newly acquired paresthesia/neuropathy in my left hip/back, chronic itching of my entire trunk, and a stack of doctor appts. coming up. I do not want my daughter to wind up like this!!

I am on 6 mgs of prednisone which I have been tapering since last October from 10 mgs. I had to come off ibuprofen not only because of my stomach, but because it gave me high blood pressure. I take no other pain killers.

Many people live like this unfortunately, Michelle, and I hope you can find something that wards off all the many various illnesses and syndromes one can get once something sets in. I was lucky, I lived a good healthy life for 66 years, which is now ten years ago.

My heart breaks for the young ones, and you sound young to me, at least my daughter's age, which is 50. Good luck to you.


Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986