Fibromyalgia

[pomtzu]

Does anyone here deal with fibromyalgia, or know anyone that does? If so, I'd be interested in how you/or whoever, deals with all the issues associated with it. I was recently diagnosed with it, but don't want to take any of the meds currently available for this condition, such as Neurontin and Lyrica. Several years ago, my spine surgeon had me try both of these for nerve pain, but I don't like the side effects at all, not to mention that they are quite pricey!

Any input would be appreciated. Thanks............

[BitsyNaceyDog]

My mom has it. I'm not close to my mom, though, and I have no idea how she manages it. I do know her doctor put her on a strict diet because she's very overweight and that adds to her problems, but she refuses to change her eating habits. I don't know what, if any medications she's on, though.

I wish I had some advise to offer you, or some resources to point you to, but I don't. Good luck figuring out what works best for you.

[aTailOf2Kitties]

I have a friend with it. She takes all kinds of meds, but she has other health problems too, so I don't know what meds she takes for what ailment.

[carole]

Anything you want to know feel free to PM me i have had fibromyalgia for over 18 years now, i do not take any of the meds they suggest, as i found the side effects terrible, i do take arthritis medication now and then, hardly ever, as i now have arthritis in my hands and other places, which is probably my age and also people with fibro tend to have it as well.

I take panadol which is an over the counter drug for headaches etc, i think it might be called tyenol or something along those lines in the states.

Many people say this works and that works, it is really finding what works for you, every one is different, and the degree of the condition varies between people.

I have just learn't to live with it, but it has been hard, and why i never returned to the workforce after having my daughter.

It is not a pleasant or easy condition to live with and empathy is not always forthcoming, as people see nothing physically wrong with you and assume you are fine, when in actual fact you are not.

There are many other symptons that go along with fibro, it is NOT just aches and pains, believe me, you may have some or all.


I am sorry to hear you have it,it changed my life forever and not for the better, but i console myself with , it could be worse, but on a bad day, i feel far from thinking that.

Again feel free to contact me with any concerns, or questions, i feel i can honestly answer all most anything, as i have had it for so long, i know there are a few others on here with it as well.

Sadly i think my young daughter who is only 19 has it as well, as she is displaying signs and as a young as ten years old, i was fortunate not to have it so young.

take care and ever so gentle hugs.

Just want to add i don't believe medication is the answer, but of course when the pain becomes unbearable and it does, i resort to it as one just has to.

[Sowa]

My mom has it too. I think she has a hard time dealing with it and takes a lot of pain meds, and goes to pain clinics. She tries to walk a lot as it's suppose to help but she usually can't until the pain meds kick in some. Even then it's hard but I think she says it helps a lot when she does it everyday. (her 2 dogs motivates her to walk)

[Catty1]

I don't have it but have heard that people who have fibromyagia have bodies that don't process Vitamin D very well. Apparently high than normal doses can help, and one article here says it has to be Vitamin D3.

http://healthandsurvival.com/2007/12/10/72/

http://www.ncbi.nlm.nih.gov/pubmed/16850115

My doc has me on 2000 MG per day.

[pomtzu]

Thanks for the replies.

Carole - I'll PM you tomorrow.

Catty - my body doesn't process anything well.

I have had multiple symptoms for many years, and just recently my primary care doc put them all together. I'm surprised no one came up with this diagnosis sooner, as right now, it's as plain as the nose on my face. But when the orthopedic guy sees one thing, the surgeon sees something else, and the GI specialist sees yet something else, and they all have tunnel vision and are fixed on their own specialty, then I guess it's understandable. Then one doc puts all the pieces together that the specialists have - and there's the answer. At least now I know that it wasn't all my imagination, and it explains some of the issues that nobody had an answer for previously.

[robinh]

My sister tried acupuncture for a while. Said it really helped, but she stopped because I think she likes the meds better. She's a hypochondriac and enjoys being sick.

My SO has scoliosis, stenosis and chronic osteoarthritis. He sees an acupunturist monthly and says it really helps with his pain.

[carole]

Does you sister actually have fibro, because you post is rather offensive to me and other fibro sufferers,and not very helpful or caring for a newly diagnosed person with this illness, i may well be over sensitive but then there is a reason for that,if she actually has fibromyalgia then you should be showing her some empathy,as it is a very horrible condition to live with.

i Just wanted to add if you sister has fibro it may well come across she sounds like a hypochondriac because the condition is well know as the irritable syndrome as it irritates almost everything in the body , i think the difference with a hypochondriac is they go to the doctor a lot and complain, personally you have to drag me to the doctor, i hate going and never go unless it is urgent.

Support and understanding is the most important thing to give someone suffering from this condition.

If i took this post wrong forgive me.

[carole]

BELIEVE me it is not in your imagination, and although it is good to get a correct diagnosis, there is not much out there to help, candace funny you mention Vitamin D, i am on a vitamin D pill once a month, as i have low Vitamin D, but then i am not an outside person, i am fair skinned and i don't want to get skin cancer,i am scottish by birth so not really made for the very harsh NZ sun,we have the worst in the world i think.

Just wanted to add acupuncture is only a temporary fix, and if you can afford to have it like three times a week for the rest of you life, you may well get some relief, as are hot spa baths, and GENTLE massage ,they all help but again you need access to them on a weekly basis and most people cannot afford such a luxury.

[Asiel]

Does anyone here deal with fibromyalgia, or know anyone that does? If so, I'd be interested in how you/or whoever, deals with all the issues associated with it. I was recently diagnosed with it, but don't want to take any of the meds currently available for this condition, such as Neurontin and Lyrica. Several years ago, my spine surgeon had me try both of these for nerve pain, but I don't like the side effects at all, not to mention that they are quite pricey!

Any input would be appreciated. Thanks............

Don't know too much about it myself but a friend of ours has it and I know she goes through the mill some days. Her doctor told her to do mild GENTLE exercise and recommended she use the hospital pool for this, she seems to find some relief from that. Hard to muster up the strength if you're dead tired though. She also goes for acupuncture and says it helps some. Seems those that have it take different meds, no specific med works for everyone apparently. I hope you can land something that will help you.

[carole]

yes chronic fatigue is part and parcel of fibromyalgia for some, not everyone,if you are one of the luckier ones, you may not suffer from it.

Yes all those suggestions are good ones,but as i said they only offer temporary relief, but hey better than none.

[Catty1]

Carole - did you say you were on Vitamin D once a month???

Maybe I misunderstood, but I take Vitamin D3 DAILY - 1000mg in the morning and the same at night.

Once a month doesn't do it!

[carole]

yes you got that right, it is given to me by my doctor,just one pill once per month, i cannot remember the dose as i have thrown out the container, but hey just reminded me i have to get a script for some this month, thanks for that.

[Medusa]

I've had it since 2000 along w/arthritis. It flares just as arthritis does, some days worse, some better. I'm going through a particularly bad flare right now. Usually if I have bad fatigue, the pain isn't as bad and vice versa. This time I have both. I tried one med, I can't think of the name of it at the moment, but the side effects were awful, worse than fibro, so I stopped taking it. My dr. prescribed a muscle relaxer which I take at bedtime. It helps me to sleep, which is another problem w/fibro; no quality sleep. I wake up as exhausted as when I went to bed.

Exercise is of key importance. If I sit too long, I corrode so I make sure I get in some exercise every day. Unfortunately, this is all I can offer right now in the way of experience and advice. Just don't give in to it, no matter how tempted you are to just stay in bed or sit all day. Besides, I can't lie down for too long b/c it's painful. I hope this helps a little, Ellie.