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.:love:

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. :mad:

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. :love:

[Medusa]

Just thought of something else: heat works wonders for me. Ten minutes in a tanning bed and it seems to go right down into my bones. I know, people object to tanning but it's helped me. I also use a heating pad on the days that it's really bad. Cold rainy days are the worst even if I don't go outdoors. Really hot baths are helpful, too.

[momoffuzzyfaces]

I have firbro as well as advanced arthritis. Yep, guilty of being low on vit D too. When my dr checked my D levels early this, year I was so low I had to take 50,000 iu twice a week for 6 weeks. Now I have to still take 2,000 iu a day.

I won't take the fibro drugs because they are way to new. I don't want on something they will be recalling in a few years telling me I now have horrible things done to my body by it. They wouldn't do anything for my arthritis pain anyway.

I take a prescrip pain pill at night and just a couple of Tylenol during the day. I was on high doses of Ibrophen for years. Now I'm starting to have kidney trouble from that so can't take it any more. Have to watch the Tylenol too because it can damage the liver. Some days I feel like I'm fighting a losing battle while standing in a pool of quicksand.

I used to love hot baths but now my knees are so bad I can't down into the bath tub so it's showers only. The hot water on my fibro areas does feel wonderful though.

Now my arthritis is getting into my upper arms. The pain from that is meeting the fibro pain. But I am determined to keep going. I do need to rest a lot though. :love:

[carole]

oh i can so relate to all you have both written here, yes heat does seem to help a bit, only wish i had a giant wheat pack the length of my body, i have to agree the meds suggested for fibro are no good for me either, gave those up about six months after my diagnosis all those 18 yrs ago, i do worry about my liver as i take the panadol,they actually prescribe me 300, and give me as much as i want, stupid really, but then that is doctors for you, i take it when i need it and that is all, like you both i have arthritis now and it is getting worse daily, i don't really come to PT like i used to , as it hurts too much to type now, as my fingers are the worst, especially my right hand, and yes i am right handed, useless with my left, i am concerned as they are starting to bend over and i cannot straighten them anymore, i worry i will loose the use of my right hand.

Hip has been playing up for over two years now, and i have a little arthritis there, the problems are ongoing, but then i am at that age where everything is downhill anyhow.

You just have to take the good days and really enjoy them, and not let the bad days overcome you,it is hard to stay positive some days,i have to be honest and i feel somewhat cheated out of a life i could have had, had i not had this illness, since i was only 35 when i was diagnosed with it,never mind life goes on .

It is learning what works for you,taking the time you need to rest if you can,for example travelling has always been a real problem for me, and i cannot ever see me taking a flight overseas,not that i can afford one anyhow lol, but oneday maybe i would love to return to the land of my birth scotland, it seems now impossible because of this condition,even a car trip is hard, however i rest up plenty before the trip and take my pain killers before travel, we also have traded our sports car in for a big nice comfy car, and now travel is so much better for me.

You just have to adjust your lifestyle here and there.

I really hope you have supportive people in your families, luckily my husband is good, and my children are starting to become aware of what mum can and cannot do, and don't have such high expectations of me as when they were little,the rest of my extended family are not so good ..and it pains me to write that, as all one wants is understanding, not pity,sympathy, just understanding.

Medusa i am sorry to hear you are in a bad flare up, they are so bad sometimes,the only thing that keeps me going is knowing that it will pass, and it does, it is when they last like two weeks, you feel you just about can take no more.

very GENTLE HUGS to you and my fellow fibro sufferers, may your days be filled with less pain,kindness and surrounded by loving and caring people.

[Medusa]

Medusa i am sorry to hear you are in a bad flare up, they are so bad sometimes,the only thing that keeps me going is knowing that it will pass, and it does, it is when they last like two weeks, you feel you just about can take no more.

My flares last much longer than 2 weeks. This one is going on 3 months now. I'm no longer on strong pain killers b/c my body becomes accustomed to them too quickly and then they no longer work. The key for me is staying active. Working out may hurt a little while I'm doing it but I hurt much more if I don't do it. This is the most that I've ever talked about it b/c I believe that what you give your attention to grows. I refuse to talk about it if someone asks me other than to say "better and better". However, if I can help someone else by answering questions, then I'm all too happy to do so.

[carole]

I have to say that exercise just makes matters far worse for me, but i do try, on the treadmill again, have to do it ,as i need the exercise.

I rarely talk about it either, just that when a post comes up like this one, i feel bound to share my experiences,give advice where i can,when you are first diagnosed it is quite hard and confusing at times, and it is good to know others out there understand.

As i have pointed out no two people are the same with fibromyalgia, i think that is quite an important thing to state, you cannot and should not compare yourself with other fibro sufferers,what you experience may well be different to others.

I personally am in constant pain every day,but some days it is bearable other it is not,and it is not just fibro causing it either,it is just ongoing really, you just have to learn to deal with it as best you can.

Honestly people don't want to hear when they ask you, how are you today, oh well i got this , i got that,they soon tire of it, you just say fine, even though you are feeling like crap , lol,and besides it does you no good to dwell on it either,you just have to make the best of what you are given in life, and count your blessings i guess.

I just wanted to add i used to belong to a fibromyalgia support group some years back, it folded in the end, and i left it well before it did, i found it depressing to go there and talk about how bad we all felt, there were some good parts of it, but mostly it was not good for me at all,.

Medusa i hope your flare up eases soon, bless you.

[momoffuzzyfaces]

I try not to even think of my fibro any more than I possibly can. I just accept I'll be in pain and deal with it. It does bother me that my arthritis makes it so hard to walk. But I refuse to go to a wheelchair. I'd have to go to a nursing home and give up my cats. Just not an option for me. I'll take the pain.

One thing that has been bringing me a bit of comfort now that it's cooler is a super soft fluffy throw I found. I love wrapping up in it, specially around my shoulders. It's like getting a hug from a soft fluffy bunny!!! :D

[carole]

And don't the cats just bring you comfort,my ellie is such a sensitive wee thing, she always seems to know when i am not well, she hardly ever comes up to you and close or sleep beside your head, but when i am not really well,she is there, she knows i swear.

They are great healing therapy i believe and when i am having a bad day, i love nothing better than to snuggle up with them and stroke them, brings me comfort anyday over drugs .:)

[pomtzu]

Thank you all, for the input. Yes - everyone is different indeed.

Pain meds are really out of the question, since they have a weird affect on me. Any OTC such as Tylenol is useless for me, and the only thing that helps at all is Excedrin, but being that it is half aspirin, I'm not supposed to take it. At times, I have no choice tho. When the fibro pain teams up with the advanced arthritis, it's no picnic. Heat helps the neck, shoulder and arm pain and I do have the wraps that you heat in the microwave, and hot showers feel marvelous. Trouble is, you can stay in the shower for just so long. :eek: I have meds for the IBS, since that's just not something you can ignore and requires intervention - it just won't go away on it's own. Temp changes weatherwise, do a number on my hands - just so much as a drop from late summer warmth to a cool Fall day, turns my hands to ice, and this lasts all thru the Winter. As bad as it is tho, I'll take the cold over the heat and humidity of Summer. I hold my hands under the hottest running water that I can tolerate many times thruout the day, wear gloves (yes-in the house too), and have tried hand warmers but they don't work very well. I try not to give in to the fatigue too, even tho I have to push myself thru and past it. Thankfully, not all symptoms strike at the same time, and not always with the same degree of severity.

This is just something that I have to tolerate I suppose - and no - I don't like to talk much about aliments either. It sure doesn't make them any better. I'm thankful that I'm still able to get out of bed each morning and have a reasonable amount of functionability and don't have to depend completely upon others. Think of all those who aren't that lucky.....

If anyone hears of some new miracle relief - please pass it along! :)

And anyone that thinks fibro sufferers are just a bunch of hypochondriacs - please feel free to walk in our shoes for a while. :(

[carole]

Ditto Well said Ellie.

[momoffuzzyfaces]

Not one of my cats likes to cuddle. I sure wish they did. They are more into the "let's keep mommy moving by tearing things up so she will have to pick up after us" types.

Grandma will lay on the bed with me as long as I don't dare touch her. :D :love: