Fibromyalgia

[momoffuzzyfaces]

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

Thanks! Those Hugs really do make me feel better!!!

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!!!
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*

[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

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.