Fibromyalgia

[Lady Jewel]

I know there has to be other Fibro sufferers here. Its such an insidious and painful disease. Would be nice to have a place where we can share stories, support one another, discuss new medications and therapies that might help us.


Jewel

[Lady Jewel]

Bump...I cant be the only one here with Fibro.

[NikiNik]

I have it too.. Though in the last year or so it hasn't bothered me as much as it use to. I firmly belive that my aches and pains are not nearly as bad because my head is in a better place than it use to be. Actually a lot of my health problems are a lot better.
:)

[Lady Jewel]

Yes, your emotional state DOES have a big effect on Fibro.

Genlte hugs,
Jewel



I have it too.. Though in the last year or so it hasn't bothered me as much as it use to. I firmly belive that my aches and pains are not nearly as bad because my head is in a better place than it use to be. Actually a lot of my health problems are a lot better.
:)

[christie]

*raising hand*

I am in what is probably my worst fibro flare in over 10 years.

Not a happy camper,
C

[NikiNik]

*raising hand*

I am in what is probably my worst fibro flare in over 10 years.

Not a happy camper,
C

Sorry to hear that sweetie.. I feel your pain and hope that you get to feeling better soon.

[Rook]

My mother was diagnosed with Fibro in the early 90s when they were still saying it wasn't a Sure thing type disease....
They're suspecting I have it, from time to time I get 'flares' that closely resemble the symptoms....
'specially when I'm stressed, or the weather's not optimal
But then, I try hard not to let things stress me too much because then I trigger asthma, and Cluster headaches, depending how bad the stress level is....

There's a medication out for Fibromyalgia, but when the commercial reads all the side effects, it's unreal...
The "cure" is worse than the sickness...:eek:.

[Lady Jewel]

Awww honey, Im so sorry. Sleep is the single most important thing for us fibro sufferers. And please be kind to yourself my friend. I know its not easy. Has anyone tried Cymbalta? Ive been on it since it came out. It doesnt help the pain, but it helps the fibro fog and some other symptoms that I have.

I need to unburden my soul about something that I am very very scared about. I had some labwork done a few weeks ago and got the results today. I tested postive for an autoimmune disease that require further labwork and tests. It could be lupus. Who knows. Im scared to death. Those of you who know me, know I have already been put thru the ringer these past 7 years healthwise. I know that I will get thru this just like I have everything else. But Im scared. And tired. Ive had my fill. I try and have a positive attitude and not complain. So Im sorry if it comes off like that.

Im glad we started this thread and can support each other.

Gentle hugs,
Jewel


*raising hand*

I am in what is probably my worst fibro flare in over 10 years.

Not a happy camper,
C

[Soft*Silver]

I was diagnosed with Fibro in 1989. I had it mastered until 2007 when I was hit by a semi..twice. After herniating four back discs, it flared up my fibro. I just spent this year trying and succeeding getting the fibro to a point where I could tell the difference between it and the pain from my back injury. I am so well, in fact, I am going back to work. Rest, water therapy, muscle relaxers, a change in diet...did I say rest>? These were my tools...

[Lady Jewel]

Good for you softness. I wish you continued success in the Fibro battle. Nice to see you again btw.


I was diagnosed with Fibro in 1989. I had it mastered until 2007 when I was hit by a semi..twice. After herniating four back discs, it flared up my fibro. I just spent this year trying and succeeding getting the fibro to a point where I could tell the difference between it and the pain from my back injury. I am so well, in fact, I am going back to work. Rest, water therapy, muscle relaxers, a change in diet...did I say rest>? These were my tools...

[Soft*Silver]

Good for you softness. I wish you continued success in the Fibro battle. Nice to see you again btw.

good to see you, too, Jewel, and so many others! It actually feels like a community here...

[Lady Jewel]

Trying to keep this thread alive for all of us Fibro folk.

Gentle hugs,
Jewel

[Lady Jewel]

I got a PM asking me what Fibro is, so I am quoting a very short definition from the National Fibromyalgia Associations website:

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.

Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.

Whether you have been diagnosed with fibromyalgia or suffer from its symptoms, or have a family member or friend with the disorder, this section is designed to provide you with a better understanding of this chronic pain disorder that affects millions of people worldwide.

[T D]

I was diagnosed with Fibro in 1989. I had it mastered until 2007 when I was hit by a semi..twice. After herniating four back discs, it flared up my fibro. I just spent this year trying and succeeding getting the fibro to a point where I could tell the difference between it and the pain from my back injury. I am so well, in fact, I am going back to work. Rest, water therapy, muscle relaxers, a change in diet...did I say rest>? These were my tools...

Personally I have found that rest is ESSENTIAL! There's just no gettin around it, lots of rest. I finally reached a point where I figured out the signs of an oncoming flareup. I then discovered if I slept as much as my body wanted to sleep that I could at times keep it at bay. I would sometimes sleep 4 hours in the afternoon/evening, get up for a few hours and then go back to bed and sleep all night. The more I did this the less often a flare up would rear it's ugly head.

I wasn't diagnosed until around 2003, but now that I "know" I can see the symptoms going as far back as the early 80's. I lived with progressing pain for at least 20 years until it reached a point that I just couldn't tolerate it any longer. I was missing work because I could barely walk, my hands hurt so bad I could barely use a computer, etc. etc. Pain is an odd thing, it will sneak up on you and the next thing you know you think it's "normal", when in reality it's anything but.

[Kimbo]

I'm raising my hand...I was diagnosed in the early 90's along with hypo thyroid disease. It was a pretty intense time before I was diagnosed. It was all very slow and progressive, I noticed the pain and sore spots but I stayed very active.

Earlier in my treatment I tried a lot of drugs at my Dr.s insistence ...Wrong thing for me. I just have not found much that does help other than some basic things...lots of rest, stay warm, stay active, eat right and take my muscle relaxers, do a toke at night. The "fog" is killing me though. The mental impact, especially when I am tired, can be intolerable at times. I'm learning things and doing things differently but there are days it takes everything that I have to make it thru. It has only been recently that I have had it this bad.

I see a rheumatologist every 5 years for Lupus testing and to keep an eye on my Fibro. I have an appt in Jan so I am anxious as to what will happen or ? Lupus runs in my family.

Lady Jewel..I'm sorry this is happening. If there is anything I can do just holler.

[Lady Jewel]

Kim, Im so sorry that you are a part of our "elite" club :). The fibro "fog" is tough. Especially for those around us that dont understand it. Ive been on Cymbalta since it came out, and while it does nothing for the fibro pain, it has helped with the "fog" a bit.

Im going to keep you in my thoughts and prayers that when January arrives, you will get nothing but positive news.

And thank you for your support. It means a lot.

Gentle hugs to all,
Jewel


I'm raising my hand...I was diagnosed in the early 90's along with hypo thyroid disease. It was a pretty intense time before I was diagnosed. It was all very slow and progressive, I noticed the pain and sore spots but I stayed very active.

Earlier in my treatment I tried a lot of drugs at my Dr.s insistence ...Wrong thing for me. I just have not found much that does help other than some basic things...lots of rest, stay warm, stay active, eat right and take my muscle relaxers, do a toke at night. The "fog" is killing me though. The mental impact, especially when I am tired, can be intolerable at times. I'm learning things and doing things differently but there are days it takes everything that I have to make it thru. It has only been recently that I have had it this bad.

I see a rheumatologist every 5 years for Lupus testing and to keep an eye on my Fibro. I have an appt in Jan so I am anxious as to what will happen or ? Lupus runs in my family.

Lady Jewel..I'm sorry this is happening. If there is anything I can do just holler.

[Kimbo]

Kim, Im so sorry that you are a part of our "elite" club :). The fibro "fog" is tough. Especially for those around us that dont understand it. Ive been on Cymbalta since it came out, and while it does nothing for the fibro pain, it has helped with the "fog" a bit.

Im going to keep you in my thoughts and prayers that when January arrives, you will get nothing but positive news.

And thank you for your support. It means a lot.

Gentle hugs to all,
Jewel

Thank you. I really have a hard time trusting all the new drugs, they are almost all still psychotropic, if not all. They send me through the roof with anxiety. I've very, very cautious of them. How long have you been on Cymbalta? I believe that I am more hormonally impacted--that is where I feel and know I need to keep the greatest balance.

One of the things I think I am going to do is to have a 24 hour saliva test done and analyzed. I've had such positive results with vitamin and diet changes that I wonder what more I can benefit from and at what cost.

[violaine]

good evening. i do not have fibromyalgia, just wanted to say hi, after reading this thread, {{{{ kimbo }}}} and may you all have a gentle week :moonstars:

i overheard someone a few weeks ago make a comment that too much iron made her symptoms worse.

best,
belle

[Stacy]

Good Morning Everyone!
I'm about 90% certain I have Fibro~
I haven't been officially diagnosed by a physician, but from my understanding, they have no definitive test for it. I've researched and diagnosed myself. (I have no health insurance at the moment) I've decided to treat it with exercise and stress management.
I was taking way too much Tylenol and Ibuprofen. I quit taking that daily and now sometimes go a couple weeks without any. For me it's really about learning to live with the pain.

[Lady Jewel]

Welcome to the club Mom <g>. The most important thing for us fbro suffererers is sleep. You must get as much sleep as possible. And do your research on Fibro, theres a lot of useful info online.

Jewel

Good Morning Everyone!
I'm about 90% certain I have Fibro~
I haven't been officially diagnosed by a physician, but from my understanding, they have no definitive test for it. I've researched and diagnosed myself. (I have no health insurance at the moment) I've decided to treat it with exercise and stress management.
I was taking way too much Tylenol and Ibuprofen. I quit taking that daily and now sometimes go a couple weeks without any. For me it's really about learning to live with the pain.

[christie]

We have really let this thread die!

Last week, I decided to give Savella a whirl. I have never had any success with antidepressants as pain management in regard to my fibro and I was very hesitant to walk this road again.

I'll keep updating after I titrate up to therapeutic dosing levels. So far (and I know its too early, but I am an immediate gratification kinda woman) nada. But - I remain hopeful!

[Soft*Silver]

Ihave been diagnosed with Akylosis Spondylitus. AS or AKA Bamboo back. My spinal column is actually fusing together. This also affects connective tissue, like ligaments and tendons. Inflammation of those can cause muscle soreness and pain. In other words, what they thought might have been fibro, could be just symptoms of AS. Its genetic too, so my family is all getting tested for it. And yes, many of them have been diagnosed with fibro.

I am currently on steroids, and cymbalta for this. I start injectables today. I am SO not wanting to do this. I am scared...

I also have shoulder spurs that have to be operated on. This is kicking up my Fibro/AS. But I need this done so I dont feel like a nail has been pounded in my shoulder top.

[Outlaw]

Has anyone tried Lyrica?

[Canela]

Has anyone tried Lyrica?

I take Lyrica on an as needed basis and it works well for me...been taking it for the last 2 years or so.

[AtLast]

Ihave been diagnosed with Akylosis Spondylitus. AS or AKA Bamboo back. My spinal column is actually fusing together. This also affects connective tissue, like ligaments and tendons. Inflammation of those can cause muscle soreness and pain. In other words, what they thought might have been fibro, could be just symptoms of AS. Its genetic too, so my family is all getting tested for it. And yes, many of them have been diagnosed with fibro.

I am currently on steroids, and cymbalta for this. I start injectables today. I am SO not wanting to do this. I am scared...

I also have shoulder spurs that have to be operated on. This is kicking up my Fibro/AS. But I need this done so I dont feel like a nail has been pounded in my shoulder top.



I sure understand why you are scared, I would be too. Wishing you the best with this. I hope you have lots of support around you.

I have had bone spurs removed on my spine in the past and although it was a long surgery and recovery, I did have a good response.

Take good care! Let us know how you are doing.

I have fibro, but am now wit a new doc that is looking at other possibilities. Sucks!

[christie]

Has anyone tried Lyrica?

I have as has my father. I am not a fan.

I've also tried Savella. Not a fan of that, either!

What has done amazing things for me is establishing a relationship with a chiropractor. I'm fortunate that my health plan covers visits. I've been going once/twice a week for several months now and the difference the warm heat/TENS combined with adjustments is just short of my own personal miracle.

For the first time in almost a year, Jess is able to cuddle me in bed without my skin feeling as if I am on fire.

My shoulders and the burning pain across my upper back has eased - I have days like yesterday (after a chiro visit) that I am able to be the workaholic I am without it being such a struggle. I felt "good" - and that has been hard to come by.

I did see a new OTC/homeopathic ad for a fibro treatment. I have it on the list to do some label reading - I can't find a link for it, but I will post it as soon as I find it in the drug store.

Best of luck to you.
Christie

[lipstixgal]

Has anyone tried Lyrica?

Yes I have lyrica and flexeril as well. I will try the savella next or the cymbalta if the doctor prescribes it to me..I only take the lyrica on a need be basis as it causes weight gain..

[lipstixgal]

I have as has my father. I am not a fan.

I've also tried Savella. Not a fan of that, either!

What has done amazing things for me is establishing a relationship with a chiropractor. I'm fortunate that my health plan covers visits. I've been going once/twice a week for several months now and the difference the warm heat/TENS combined with adjustments is just short of my own personal miracle.

For the first time in almost a year, Jess is able to cuddle me in bed without my skin feeling as if I am on fire.

My shoulders and the burning pain across my upper back has eased - I have days like yesterday (after a chiro visit) that I am able to be the workaholic I am without it being such a struggle. I felt "good" - and that has been hard to come by.

I did see a new OTC/homeopathic ad for a fibro treatment. I have it on the list to do some label reading - I can't find a link for it, but I will post it as soon as I find it in the drug store.

Best of luck to you.
Christie

Chiropractic maybe I should look into that and see if my plan will cover. Does anybody work a full time job because I would like to work and make some money of my own and not rely on my trust fund so much?? Just wondering

[christie]

Chiropractic maybe I should look into that and see if my plan will cover. Does anybody work a full time job because I would like to work and make some money of my own and not rely on my trust fund so much?? Just wondering

I work more than a fulltime job - there are days that are 16 hours + for me. We actively parent a 17 year old and care for aging parents, have remodeled a house over the last two years and my work requires that I drive about 1000 miles per week. So, yes, I do think its possible to work a job and have fibro.

To me, my working is a must for my well-being. I have found that I need to find that delicate balance of too much/not enough activity. I can't imagine not working, and when someone tells me that I need to lower my stress level so my fibro doesn't flare as much, I tend to look at them as if they have three heads.

To me, I had to make a decision that I would not be the sum of my ailments. I think that when we have chronic illnesses, we have the choice in how we view it - I choose not to let it beat me, although, there are days when it does. I just had a conversation with my chiro yesterday about my progress in treatment and he expressed that he had not originally thought I would be this far along. I told him that I had to make the decision to get better - and I am.

I think that if you are able to work, it might be beneficial to the emotional side of being chronically ill. I know it gives me a sense of purpose. I can't lay in bed when I don't feel well - I don't have that choice. I have a company to run, employees depending on me to be here to lead them and my family depends on my income, not to mention that I have an addiction to lovely shoes!

If you are in the position, perhaps a good entry into the workforce would be to find a local cause and become a volunteer. That's less pressure to me than working a job; although your obligation to show up is the same.

Best,
Christie

[lipstixgal]

I work more than a fulltime job - there are days that are 16 hours + for me. We actively parent a 17 year old and care for aging parents, have remodeled a house over the last two years and my work requires that I drive about 1000 miles per week. So, yes, I do think its possible to work a job and have fibro.

To me, my working is a must for my well-being. I have found that I need to find that delicate balance of too much/not enough activity. I can't imagine not working, and when someone tells me that I need to lower my stress level so my fibro doesn't flare as much, I tend to look at them as if they have three heads.

To me, I had to make a decision that I would not be the sum of my ailments. I think that when we have chronic illnesses, we have the choice in how we view it - I choose not to let it beat me, although, there are days when it does. I just had a conversation with my chiro yesterday about my progress in treatment and he expressed that he had not originally thought I would be this far along. I told him that I had to make the decision to get better - and I am.

I think that if you are able to work, it might be beneficial to the emotional side of being chronically ill. I know it gives me a sense of purpose. I can't lay in bed when I don't feel well - I don't have that choice. I have a company to run, employees depending on me to be here to lead them and my family depends on my income, not to mention that I have an addiction to lovely shoes!

If you are in the position, perhaps a good entry into the workforce would be to find a local cause and become a volunteer. That's less pressure to me than working a job; although your obligation to show up is the same.

Best,
Christie

Thanks for the input I have been putting in resumes but haven't heard from anyone yet but would like to have my own money for myself..I guess you must feel tired a lot of the time I admire your courage and perseverance as well!!

[Outlaw]

I take Lyrica on an as needed basis and it works well for me...been taking it for the last 2 years or so.

I have as has my father. I am not a fan.

I've also tried Savella. Not a fan of that, either!

What has done amazing things for me is establishing a relationship with a chiropractor. I'm fortunate that my health plan covers visits. I've been going once/twice a week for several months now and the difference the warm heat/TENS combined with adjustments is just short of my own personal miracle.

For the first time in almost a year, Jess is able to cuddle me in bed without my skin feeling as if I am on fire.

My shoulders and the burning pain across my upper back has eased - I have days like yesterday (after a chiro visit) that I am able to be the workaholic I am without it being such a struggle. I felt "good" - and that has been hard to come by.

I did see a new OTC/homeopathic ad for a fibro treatment. I have it on the list to do some label reading - I can't find a link for it, but I will post it as soon as I find it in the drug store.

Best of luck to you.
Christie

Yes I have lyrica and flexeril as well. I will try the savella next or the cymbalta if the doctor prescribes it to me..I only take the lyrica on a need be basis as it causes weight gain..


Thank you for your feedback. I don't have Fibromyalgia, but I do have Lyme disease. Some of the symptoms are similar, as is the medication. I have been curious about Lyrica and people's personal experiences good/bad/indifferent. Thank you for sharing.

[lipstixgal]

Thank you for your feedback. I don't have Fibromyalgia, but I do have Lyme disease. Some of the symptoms are similar, as is the medication. I have been curious about Lyrica and people's personal experiences good/bad/indifferent. Thank you for sharing.

I had Lyme's disease too and a very bad case of it and then I got the firbro so I understand your dilemma as well. I hope you get better with the antibiotics and rest it is a horrible disease!!