Fibromyalgia

[K9karen]

Anybody else out there suffer from this? If you don't know what it is, you definitely DON'T have it!
I was doing OK for a while until my wrist accident, now it's in full agonizing gear from stress. I'm getting medical records as far back as possible and letters from the rheumatologist and it'll be added in with my law suit.
Just curious. Oh, and OUCH! :eek: :(

[dukedogsmom]

Not familiar with it but sorry to hear that you're having that. Just what you need, another problem! I hope you can rid yourself of a lot of pain very soon. I know you must be really tired of it.

[iamgobsmacked]

Yep sure do, and if that doesn't suck enough, I also have MS..... But I do have it under control now. I was postively disabled for a while. Now it's mainly the chronic fatigue that gets me. Mine started from exposure to toxic chemicals.

[Pawsitive Thinking]

http://www.mayoclinic.com/health/fibromyalgia/DS00079

My Dad had it (amongst other things :( ). It seems to find its way to those who already have enough to cope with.

Hope the above link is of some help to you - big hugs

[Maya & Inka's mommy]

My sister has it.... :( . There is a possibility that I have it too, but it is not proven yet

[Daisy and Delilah]

Thanks so much for bringing this up Karen. I have recently come to the conslusion that Fibromyalgia is the only thing that describes what I've had for years. My doctor doesn't really buy into it, as I found out at my annual physical last month. I wasn't thrilled or satisfied with his answers. What do I need to do to find out if this is what I suffer from? I made an appointment with a rheumatologist to get the ball rolling, at the advice of a friend. However, they can't see me until January, 2007. This morning I go for more bloodwork to narrow a few more things down. I knew of no other course besides process of elimination. What does one do to find out if they really have it? I would love some advice from people that already know. Thanks :(

I'm so sorry to hear you have it on top of everything else. What a brave soul you are!!

[pitc9]

Gentle {hugs} to you Karen and the others that suffer with this.

[Maya & Inka's mommy]

Thanks so much for bringing this up Karen. I have recently come to the conslusion that Fibromyalgia is the only thing that describes what I've had for years. My doctor doesn't really buy into it, as I found out at my annual physical last month. I wasn't thrilled or satisfied with his answers. What do I need to do to find out if this is what I suffer from? I made an appointment with a rheumatologist to get the ball rolling, at the advice of a friend. However, they can't see me until January, 2007. This morning I go for more bloodwork to narrow a few more things down. I knew of no other course besides process of elimination. What does one do to find out if they really have it? I would love some advice from people that already know. Thanks :(

I'm so sorry to hear you have it on top of everything else. What a brave soul you are!!

A rheumatologist is the only doc who is trained to find out! Try a younger doc, the older ones sometimes don't support this

[Daisy and Delilah]

Thanks Lut!! :)

[Laura's Babies]

Ny heart goes out to you and all the people who suffer with this! ((((HUGS))))

[momoffuzzyfaces]

Yes, I have it. It along with my arthritis insures I'm miserable most of the time!!! :(

I'm so glad I have Pet Talk to take my mind off the pain. :)

[Daisy and Delilah]

What types of meds do the doctors prescribe for the pain? Is there any medication that takes care of such horrible bouts of pain?

[K9karen]

What types of meds do the doctors prescribe for the pain? Is there any medication that takes care of such horrible bouts of pain?

Thankfully, I was first diagnosed 30+ years ago by a young rheumatologist who believed in it and was fascinated by it. It is one of the hardest ailments to diagnose. Blood work may show "sed" levels up, but mostly that's for arthrisits (I also have OA)
I started with "Elavil", like a sleeping pill but I was too groggy and couldn't wait for 2 weeks for my body to adjust. The severe pain causes restless sleep, so of course you wake up feeling worse, and fatigued.

Celebrex, Bextra, Vioxx, all the good stuff, taken off the market helped with my bursitis, but barely, Cortisone shots in my hips, shoulders help a bit.

There are pressure points that doctors use to diagnose..chest (I sometimes get lumps), inside the elbows, wrists, ankles, shoulder blades. Moist heat helps as well as gentle physical therapy. But sometimes you feel so bad, you don't even want to go to therapy! One orthopedic sarcastically told me I had the "yuppy disease". He also misdiagnosed my spine/neck problems, caused worse damage with wrong PT so I dumped him like a hot potato. See ya, bye bye, stupid clod.

My fibro seems to worsen with stress (Zoloft not helping-wish there was a pill that erases bad memories) and when the seasons change, especially the fall. Honestly, since my spine has just started to bother me again (where I had surgery) I do take pain killers at night before bed.

Not only that, I was feeling much better with my life in all aspects until my wrist accident. AND I have TMJ so bad I take
muscle relaxers at night.

Not to worry though. I guess I sound like a sicko. I have a lot to deal with, but we all do. I have great friends (you guys) girlfriends of 50 years, John and my Logabeanie. I'll feel better, but it just seems like it takes forever! :mad:

[K9karen]

Yes, I have it. It along with my arthritis insures I'm miserable most of the time!!! :(

I'm so glad I have Pet Talk to take my mind off the pain. :)

THAT TOTALLY SUCKS BIG TIME! I'M WITH YA BABE!!!
GENTLE CYBER HUGS.....

[Daisy and Delilah]

Thanks for the information Karen. I just don't know how you do it. You truly are amazing! I took Elavil a couple of years ago and it took me a month and a half until I felt like I wasn't hungover the next day. Those things are really strong. I have a friend that takes one every night to help her sleep. She was lucky too, in that she found a young doctor in Key West to diagnose her Fibromyalgia. She takes Celebrex and does ok with it but some days, she can barely get around. I tested normal for rheumatoid arthritis in my tests from yesterday. My sedimentation levels are very high and I guess that means my osteoarthritis is getting worse. I just talked to a lady at the pharmacy that takes Lyrica. She has osteoporosis, scoliosis, and two herniated discs. She said the Lyrica is working so far. It amazes me how many of us are in excruciating pain all the time. There has to be some relief somewhere!! :(

[momoffuzzyfaces]

THAT TOTALLY SUCKS BIG TIME! I'M WITH YA BABE!!!
GENTLE CYBER HUGS.....
Thanks! Those Hugs really do make me feel better!!! :D

I'm on 4 different meds for my blood pressure so the only thing I can take for pain is ibruprofen. One of my bp meds knocks me out so I have to take it at bed time. Bad thing is, I slept through 2 tornardo warnings this spring but the doctor won't take me off of it because he says I need it. sheesh!!! :eek:
At least if I get killed by a tornado I'll never know it.

[K9karen]

Fibromyalgia is an autoimmune disease, so make sure your doc checks for Lupus too. Some of the symptoms are the same.

The scary part is my spine, where I had surgery, is killing me, after almost 4 months of very little discomfort. I hate going to sleep (look at the time) because I get stuck in a position and have to scream to be helped to move. So I need to call the surgeon and reschedule my Dec appointment cause this is getting out of hand. All I seem to do is complain, and I apologize. I feel like a walking disaster. An old rotator cusp injury is driving me nuts too. Geesh. *Creak* *Creak* *Creak* :rolleyes:

[Daisy and Delilah]

{{{{{HUGS KAREN}}}}} and {{{MORE HUGS TO EVERYONE ELSE}}}

[carole]

My gosh when i saw this I was so excited, i know that sounds dumb, but i have felt so alone, i knew of one member here who had fibromyalgia, but that was all , yes Karen i have it, i was diagnosed over 11 years ago, two years after the birth of my daughter.

Yes Fibro is a miserable chronic illness and very unpredicatable, it is the reason i donot work outside of the home,because it is so up and down i doubt whether i could even hold down a job, i would be off sick way too much and i take my hats off to anyone who continues to work, you amaze me, i find just the day to day running of the household too much sometimes,but i do my best. it has changed my life tremendously and not for the better, what people donot realise is so many things go along with this miserable condition, it is often referred to as the irritable syndrome, because it does just that irritates so many parts of the body, not just simple aches and pains.

I gave up on trying any of the medications suggested as they made me feel worse, i take panadol only which i think is like your tynenol, not sure on SP, and i take Arcoxia maybe two pills per month only or when i have a bad flare up, i have just had one of those and am still getting through it.

I do believe my condition was brought on by extreme stress when my baby girl arrived, i had to wait six wks for another heel prick test, as they did not take it right and there were concerns she might have had cystic fibrosis, she also had another problem in hospital the worry and stress i think sparked it off.

It is not a hereditary condition, but my mother had symptons years ago and my sister seems to have some, but luckily they are not too bad, everyone is different, you can have all the same symptons, some of them and it can be from mild to severe,i fear my Melissa has it as she often complains of sore legs from walking, whereas none of her friends who do the same do.

yes having this is not fun at all, but i am thankful it is not life threatening, but there are days i just want to crawl into a hole and never get out of it, i am very lucky i have such a supportive husband, he is my rock, my own family really don't give me the understanding i need, but he lives with me, see's my pain and suffering and so even though at times it is extremely hard on him , he just hangs on in there for me.

Being in ongoing pain unfortunately causes depression too, so that is a normal part of having a chronic illness, one that is difficult to deal with, but normal all the same.

I have learn't over the years just to take each day as it comes, and also that making plans ahead just cannot be anymore.

Fibro Fog is another thing that just makes me so fustrated at times, i want to scream,luckily for me it only hits now and then he he.

Thanks so much for starting this thread, it has been so beneficial to me just to come here and to let people have an understanding of life with fibromyalgia, it is very mis-understood and is really the invisible disability.

Because Doctors cannot find what actually causes Fibro and because it is mainly women who suffer from it, although i do know a male with it, and they cannot find a cure, they labelled sufferers for years as it is all in the head, my gosh if it were i would be relieved then i could do something about it, that made me extremely angry and i wished every doctor who even thought that could spend a day in my shoes,I used to think trust me to end up with something that is thought of like that,CFS is also very similar to Fibro as is polymyalgia, difference with the poly is a blood test can diagnose that, not the same with Fibro,( luckily that view is not the standard anymore and the research they are doing is coming up with new things all the time,still we are a long way off for a cure i think.,but one can only hope.)

PS karen the bit that bugs the heck out of me is when i will just turn my head to look at something, like a normal person and bang my muscle feel likes its locked, happens in the big muscle in the shoulder all the time and i am in agony anything from days to weeks, i wish they could do an xray and see what happens, until i had fibro i used to think i had pulled a muscle ouch it really is the worst,along with fibro for those who donot know often comes IBS i was first diagnosed with that before Fibro, you also have to watch out for Thyroid conditions, i am very prone to that because of the fibro and my mother has had both types,gastric reflux, and the list goes on and on lol. :)

I dont write this for sympathy , just in hope to educate people who have either heard of the condition or who have not, and really have trouble working it out, as to me that is the key for us to have some understanding, and to me that is all i ask for.

[K9karen]

Carole...I've met total strangers, who in conversation (Lord knows how it comes up-I guess people in pain spot people in pain) who say they have fibro and when I tell them I do, they almost cry to find someone who understands it. It's a relief to find a fellow sufferer so whenever you need to chat, email me (in my profile) or PM me, I won't mind. I know girls on Disability with it. It is hard to hold a job with it. I still say that, between 2 ill parents, back problems etc and especially fibro from the stress, caused me to lose my job. I never lost a job in my life but it got so bad I couldn't mentally, physically, emotionally function.

Next time you feel like digging a hole, let me know. I'll dig one too and maybe we can meet half way, across the ocean for some gentle hugs! I'm lucky I have lots of support from the guys but when I have an outbreak, I especially miss my mom and her hugs and sympathy. :(

[dukedogsmom]

Hey you sufferers. I've looked over some message boards for this and this one looks to be good if you want to join.
http://forums.delphiforums.com/Fibromates

[carole]

Thanks will go and check it out now, i also belong to another website which gives information on all the latest research about Fibro, it can be very interesting, I used to belong to a Fibromyalgia support group some years back, and for a time it was good, but in the end i found it depressing, the group closed after a while so i guess i was not the only one finding that, it is always great to have someone who understands and one you can share with for sure and thanks Karen i will indeed take up your kind offer, please feel free to do the same with me,we fibromyalgics need to stick together eh?

Ha I went to join up and i think i am already a member because my username was already in use i doubt seriously there would be two with my name especially the NZ at the end lol. :)

[Daisy and Delilah]

Sorry to bring up this old thread. I have just been diagnosed with fibromyalgia for sure by a rheumatologist. Does anyone take Cymbalta for this or anything else? I would like to hear from those who use it and know about it. Also......has anyone ever heard of Vitamin B-12 injections for this disease? I just heard that there's a new form in a new drug that's a nasal gel. I can't think of the name right now--maybe Nascabol?? Anybody use this?

[Catsnclay]

I too have Fibro + arthritis + hip & spine problems...... no walk in the park, believe me :rolleyes:

I take a lot of medication, mostly for chronic pain, but from what I have been told, there is no medication for Fibro.

I do get monthly B-12 shots, at first they worked wonders, now I'm not so sure, but I still get them.

Can you tell us more about this nasal gel????

[Daisy and Delilah]

Catsnclay-you have just about the same things as I do. It sure isn't any fun. I don't know much about the gel. A co-worker told me her dr. is giving it to her to help with energy levels she lacks with fibromyalgia. She said it doesn't do much for the pain but does help her energy which helps her to cope with the effects of the disease. Here is their website www.nascobal.com/ I hope that will come up for you. I just Googled it. From what I hear, there is no medication for FM either. I think it's alot of hit and miss.

Good luck to you. :)

[Daisy and Delilah]

I just read that Lyrica is now being prescribed for fibromyalgia.

[Catty1]

Here is something from a list I have, developed by some medical and nutritional professionals. It is suggested nutritional support (not cure) for many conditions, and this is the list for Fibromyalgia.

These are be some things that can be brought up discussion with others on any forums you are on, or with Ptrs or whoever.

List first, then explanation:

Fibromyalgia - CN plus Total Control, Herbal Concentrate,
Herbalifeline, Dong Quai, (Nutri 9 & Brazilian Tea may also Help –
Eliminate Aspartame from your diet.)

The above items are Herbalife products, but I will detail them a bit below so you can find something from another source.

CN = Cellular Nutrition - one protein shake a day; soy isolate powder(flavoured) plus whey isolate powder to make it about 30g protein.
Multivitamin with some minerals that you take 3 times a day (body runs 24-7)

2. Total Control - used as a snack control and metabolism booster - contains caffeine-type ingredients(again, non-crash)

3. Herbal Concentrate - called "tea" it contains a green-tea type caffeine that doesn't do the caffeine 'crash

4. Herbalifeline - Deep sea (sardine) fish oil in gel caps - Omega 3. 2 caps 3 x day to start.

5. Dong Quai - A good version of this Chinese herb in tablet form; the "woman's" supplement.

6. Nutri - 9 - Calcium tab with 9 other minerals(make magnesium or Vit D one of them for better absorption)

7. Brazilian Tea - like #3, but contains guarana, a stimulant herb from South America.

8. This one is just from me - is your hemoglobin/iron level good? A pharmacist showed me several types of iron....Ferrous Fumarate is the best absorbed type, he said. Taken with a Vit C tablet (500mg or so) helps even more.

Just for information...check it out with doctor, others, etc.

I HOPE you all feel better soon! HUGS!

[Pawsitive Thinking]

My Dad had it too :( Poor you - big hugs

[Daisy and Delilah]

Thanks for the info and well wishes!! Candace, that is very helpful. Thanks. I am also anemic and I take iron supplements every day with Vitamin C for absorption. From what I understand, with FM, your body has to be in tip top shape to tolerate it at all. That's the key. A night without sleep = a very bad day and filled with more pain. I will definitely look into some of the things you posted. Anything and everything is worth a shot!! :)

[carole]

As you can read there are quite a few Pters inflicted with this chronic illness, I have had it for over 12 years now, and i am sorry to hear about your recent diagnosis, it is no fun, no walk in the park for sure, at least you know what you are dealing with now, although there is really not alot of stuff out there that seems to work, I have yet to find something,one thing is you have to start putting your needs first, in other words, take rest when you need it, and only do what you can when you can,enjoy your good days,if you are lucky enough to have some,but DON'T over do things, something us fibromites seem to have a problem with lol.

I am going through a rather nasty flare up at the moment, and it is very painful, my muscle in my left shoulder blade has locked,best way to describe it, i was in horrific pain and could barely move without excruitating pain,but today the pain is more localised in one area, i have yet to know if this is fibro related, i imagine so,or something else,it only happens like this maybe four or five times a year, this time i was out having dinner, which was embarrassing and none too pleasant,had to go home,that was a mission in itself, does anyone else have these terrible painful moments.

It is a tough illness to deal with, very complex, and you don't get a heck of alot of understanding,mainly because you look fine,always know there are others here who completely understand and can offer you support anytime you need it, please feel free to PM anytime.

Keep in mind we all have similar symptons to different degrees, no two people are exactly alike,but we sure can empathise with what you are dealing with right now. HUGS ever so gentle ones.

[Daisy and Delilah]

carole; I'm so sorry to hear about all the pain and problems you have with FM. You're so right in saying that no one understands it. I already have my family and friends practically snickering when I mentioned it to them. It's not that they're being hateful but that they just don't know anything about it. I really wish they would take the time to research it like I have.

Good days and bad days is exactly the way it is. I'm having a pretty foggy day today and very low energy. I still try to work parttime but it's so hard. I can't stop thinking back to the way things used to be years ago. As you mentioned, everything is now an effort rather than routine or just for pleasure. It's an ordeal for me to just go grocery shopping some days. I've started buying in bulk(when I can go) to avoid extra trips when I know I may not feel like going. I have already learned to ask people to pick things up for me if they're going to a store. I've always been so independant but not any more.

Have you ever heard of the magnesium injections for this? I would like to find someone that's had these besides my friend that has it.

Best of luck to you. I hope we can find a cure for this one day. :(

[carole]

I admire anyone who keeps in the workforce, i was not in the workforce when diagnosed, having a pre schooler, i have never re-entered the workforce and honestly i simply could not handle it, i find it enough just doing the housework and being a mother, so if you can hang onto your job, that is fantastic.

Yes well i would love those people who snigger behind your back or to your face to spend a day in our shoes, it is the pitts, being honest here,sometimes i wonder how we all keep going,it hurts so much.

Oneday i sure hope they do come up with a cure or at least something that will help the pain to be managed to a comfortable state.

Fibro is very disabling both emotionally and physically,and you do feel isolated,and depression is very common for anyone who is in constant pain, there are days i just feel like giving up,but i know there will be good days and i just wait for those to come and enjoy them to the fullest,i probably do overdo things when those days are here, but can you blame me lol.,gotta do stuff when the going is good as they say.


I wish you all the best, and yes i know what you are going through my dear,you have all the understanding and empathy right here,I am lucky my husband is reasonably good, and he certainly knows my pain is real,he is the only one who sees it daily, and right now he knows how much i am suffering, I do hope you have someone close and dear to you who can offer you some level of kindness and caring and understanding, but you know only those like ourselves really can understand, it is a very complex illness. :) More gentle hugs coming your way.

[Daisy and Delilah]

Thanks carole. Gentle hugs to you too :)

[momoffuzzyfaces]

I am going through a rather nasty flare up at the moment, and it is very painful, my muscle in my left shoulder blade has locked,best way to describe it, i was in horrific pain and could barely move without excruitating pain,but today the pain is more localised in one area, i have yet to know if this is fibro related, i imagine so,or something else,it only happens like this maybe four or five times a year, this time i was out having dinner, which was embarrassing and none too pleasant,had to go home,that was a mission in itself, does anyone else have these terrible painful moments.
I've been dealing with something like this lately too. It feels like a big charlie horse from my right shoulder blade clean through to my front. :(
The only way I can get relief is to lay down with an ice pack on my shoulder blade and take ibroprofen. My doctor says he's sure it's my fibromyalgia causing it. I can hardly sit up when it's acting like that. Thankfully, the last few days have been lots better.

[carole]

Well you won't believe what eased my pain, it was doing my weights, i decided i was going to do the treadmill, having missed a day already, and that was kinda painful, and i was scared to do my weights, they are only 1.5kg each hand, at first there was intense pain in my left shoulder and then low and behold it was gone, temporarily, but it did not come back with the same intensity,amazing, i think maybe it helped to unlock the muscles there and stretched them out, that is my theory and i am sticking to it lol, today it is just sore all over which is normal for me,but i hit my left shoulder blade on the dormer in the house ,was looking for a leak and i forgot it was there, ouch that really hurt, i think it is worse than the other one now lol, just what i did not need eh? why oh why do we do silly things like that eh?

If anyone has any good ideas or things that help them with their FM they should post it, what works for one does not necessarily work for another ,but anything is worth a try i think.

Here's hoping everyone is having a reasonable day,or by extreme luck a really good one, HUGS and gentle ones to you all. :)

[momoffuzzyfaces]

I found a good site I think some of you might like to look into. It tells LOTS about fibromyalgia. I hadn't realized my restless legs syndrom could be linked to my fibromyalgia.
It's called:
www.fibrohope.org

[carole]

Thanks for that, i have had this for 12 years but i am still learning new things about my condition every day, it is always good to be properly informed and know what you are dealing with IMO. cheers :)

[Daisy and Delilah]

I am so glad you posted that link, moff. Thanks :) The more we can learn, the better off we'll be and we can deal with it easier. :)

I hope everyone is doing as well as can be expected. :)

[jackmilliesmom]

I suffer daily but for the pain my Orthopaedic and Rhumetologist prescribed a medication called Arcoxia which has helped with the inflamation and some normal light pain releif such as neurofen.

[Kirsten]

A friend of mine has it, it must very painful.

And a while ago, I was told by a rheumatologist that I'm prone to have it one day... :confused:

Kirsten

[momoffuzzyfaces]

I am so glad you posted that link, moff. Thanks :) The more we can learn, the better off we'll be and we can deal with it easier. :)

I hope everyone is doing as well as can be expected. :)
I'm glad I found the link. I hadn't realized that my lack of concentration and other things that were going on could be because of the fibromyalgia!!! :(

It's nice to know we aren't alone in this. :)