Fibromyalgia

I saw in another thread that many of us had this miserable condition, so I was wondering what you all do to manage it? What other conditions do you have along with it? Maybe someone can share something that will help someone else out!

I have Fibro, IBS, sleeping problems, daily headaches, scoliosis, hypothyroid, common variable immune deficiency (cvid) vitamin D deficiency (almost none!) restless leg syndrome (RLS), myofascial pain syndrome, muscle spasms, chronic Fatigue syndrome.

I take Cymbalta for the fibro for about a month, it seems to help a little. Requip for RLS, zanaflex for muscle relaxer, synthroid for thyroid, vitamins, I know there's more, I just can't think! LOL Fibro fog! Oh! I take Lortab for pain, also.

I constantly have heat on different parts of my back and neck, I try for massage therapy when I can afford it (unfortunately not often!) Biofreeze (kinda like flexall, but better) and try stretching when I can. Games and tv and movies to keep my mind off hurting!

So what are some things you all do at home to help yourselves feel better? I am not able to work, or shop, or anything and rarely leave the house at all unless it's to go to a Dr or something very important. Then I have to rest for days!!! So hopefully we can help each other!

I try to focus on nutrition and dietary management.
Take lots of supplements, make sure I get a varied diet with lots of micro-nutrients.
Keep away from any type of stimulant (caffeine, alcohol, sugar)...there is an MD here that believes Fibro is an "overstimulation" of the CNS, and advocates for "mellowing down" LOL

Best of luck to you !! I am living this nightmare too and feel for you all the way !!

Hi Hilyer
I am some what in the same boat as you I have fibro, myo chronic pain, migraines and upper back spasms. I take flexeril hydrochorcone trazadone and stadol. I also live on a heating pad. I use to do PT and massages but found them to aggrevate the prob more than help. I am very lucky to have a husband that does most of the household chores. I find playing games is such a great distration. I try and keep a possitive attitude but there are days i don't feel like getting out of bed. I hope you feel better and have more good days than bad.

What has helped me most with the fibromylagia is moving. I know that lots of people say they can't, but I have found the more I move the less pain I have. I also have severe spinal stenosis which makes long walks pretty painful. But I push myself and with the help of pain medication I go walk my dogs every day.
I recommend to make yourself walk or do some kind of exercise - you'll see it helps.

I also take Cymbalta and Voltaren

This is nothing about this thread but....Congrats on your morph Hiyler!
Duss

Hi all, I don't have fibro but I have it's kin.(Reflex Sympathetic Dystrophy)(nerves)in my torso area and hands/wrists with the bonus of interstitial cystitis and IBS.

My life is pretty much at a standstill with this constant pain.Just went for my 3rd spinal block on the 27th and basically all it did was allow me now to cry when I'm in pain.(couldn't before) The annoying thing for me is the constant need to be always sitting.I cannot lay down and I REALLY miss sleeping with hubby. And I would be happy just to be on a normal sleeping pattern instead of literally having to pass out every day.
I'm on Zanaflex,vicodin,thc(Live in C.A) ,xanax and methadone for the RSD.Donnatal for the IBS and a slew of bladder drugs.My Dr. just recommended me for a trial of the TENs unit so perhaps they may work.

I use a heating pad a lot. One of the best things that I discovered that helps amazingly for me is being in a hot tub.So I recently bought one that's portable. It's called spa2go.I would HIGHLY , HIGHLY,HIGHLY recommend it to anyone in chronic pain. It's made from like raft material so you can conform to it.It's around 250 gallons and really doesn't take up that much space. It was always my intention to eventually get a real jacuzzi but I would never trade up this tub.The price tag on avg is around 700.00 and can cost about $80 extra a mth(electricity) but I got a script from my doctor saying it helps me so we can write off the expense at tax time.I can't praise this tub enough.I go in about 3 times a day and even started being able to do some exercises in there.The care of the tub is very easy also.

I play a lot of games but when the pain is really bad, I look for a time management games. It helps me get into a zone.Thank god for big fish games Best of luck to us all

Hi Lokiee, I also have Reflex Symathetic Dystrophy to my left leg and my back after a fall at work 19 years ago. haveused a tens in the past and found it very helpful. I also have had a lot of spinal blocks over the years. Not so long ago they burnt the nerves in my lower back to try to help with the pain. So far it has worked well to the point that I have been able to take less pain killers.

What part of the world to you live in? I live in Australia.

I also love Time Management games. I also thank god for big fish games.

Hi everyone! I have had Fibro for many years i was officially dx'd in 2000 but the dr's believe i have had it since about 1980. i was always told as a child i had "growing pains" and they would go away or it was in my head or ( and this is my favorite...Not!!) "all women have to deal with these kind of pains, you will get used to it!!"
I will never forget how relieved i was when i got my DX because i knew i was not crazy but it was a bittersweet dx though as you all know!!
Anyhow along with Fibro i also have 8 herniated discs with nerve damage and a flattening of my spinal cord an the thoracic region, RLS, Vitamin D deficiency,
Hypogammaglobulinemia(IgM deficient)(it is an antibody dificiency), Diabetes,
ITP(Platelet disorder).
I am on ms contin , topomax and skelaxin for the pain and muscle and nerve spasms, I am also on 50,000 units of Vitamin D a week for the deficiency. I tried Cymbalta recently but it made me feel very strange so i had to stop it. I also tried Lyrica but i had a reaction to it so i had to stop that also. I can't Take any NSAIDS that i am told are good for Fibro along with anti-depressants due to my platelet disorder Because they can cause bleeding.
I find that after i take my meds in the morning it takes about 2 hrs then i can move a bit then i need to move around if i sit still i hurt more but i cant move constantly because of my back so i am always up for a little bit then sitting for a little bit all day long. oh and too sleep through the night i have to take Ambien CR 12.5 and even that doesn't work all the time.
The time i feel the best is when i am in WATER!! I always tell my Rhuematologist
" If i could walk around in a bubble full of water i would feel fantastic!!" but as soon as i get out of the water i feel like i was hit by a ton of bricks!!
well i wish i could be of more help to you all besides playing games here and being here to help and support you .
my support at home is hubby being the best man EVER!! he does everything for me!! Hope to see you all around the games!! sorry this was so long!!

I also suffer from fibromyalgia. Exercise will help, as long as it is in moderation. All of the problems that you have are the results of the condition. Have you asked your doctor about Lyrica? It is a wonderful medicine. I also have all of the same symptom including being unable to sleep, so I take a sleeping med. If you can sleep you can face anything. Please go easy on the pain meds. This is a life time ailment and you can live with it without pain medication. Trust me on this. My rhemutologist never gives pain med. I take Tylenol, keep moving and try to get a good nights sleep. Please keep moving. Don't let this run your life. Chancy

SapphireChild wrote:Hi everyone! I have had Fibro for many years i was officially dx'd in 2000 but the dr's believe i have had it since about 1980. i was always told as a child i had "growing pains" and they would go away or it was in my head or ( and this is my favorite...Not!!) "all women have to deal with these kind of pains, you will get used to it!!"
!

I was also told as a child I had growing pains and they would go away but they never did. About 15 years ago I was diagnosed with Fibromyalgia and was then put on all types of drugs. Now I only take one. I take one Xanax at bedtime and I sleep very well and that has done wonders than all those drugs. It seems sleep has helped me the most of anything. I also do stretching exercises every day and for the IBS that goes with Fibro, I make sure I get fiber which is hard to get in our diets but that has done wonders for that and I also eat Activia which has also been a great help. I'm feeling pretty good these days even though the cold mornings make me kind of slow but I get warmed up and off I go. Hope all of you with this can find your answer because it's probably different for everyone and takes a lot of trial and error.

SapphireChild wrote:i have to take Ambien CR 12.5 and even that doesn't work all the time.
The time i feel the best is when i am in WATER!! I always tell my Rhuematologist
" If i could walk around in a bubble full of water i would feel fantastic!!" but as soon as i get out of the water i feel like i was hit by a ton of bricks!!

My rheumatologist took me off of ambien when I was diagnosed because he said it actually makes the symptoms worse. That was over ten years ago so maybe that has changed.

And I so know what you mean about the water. I take a lot of hot baths. And if I get sweaty working in the yard or around the house as I cool off, that is intense pain so I make sure I take a shower or a bath before I cool off.

Lynnbb91157 wrote:

SapphireChild wrote:Hi everyone! I have had Fibro for many years i was officially dx'd in 2000 but the dr's believe i have had it since about 1980. i was always told as a child i had "growing pains" and they would go away or it was in my head or ( and this is my favorite...Not!!) "all women have to deal with these kind of pains, you will get used to it!!"
!

I was also told as a child I had growing pains and they would go away but they never did. About 15 years ago I was diagnosed with Fibromyalgia and was then put on all types of drugs. Now I only take one. I take one Xanax at bedtime and I sleep very well and that has done wonders than all those drugs. It seems sleep has helped me the most of anything. I also do stretching exercises every day and for the IBS that goes with Fibro, I make sure I get fiber which is hard to get in our diets but that has done wonders for that and I also eat Activia which has also been a great help. I'm feeling pretty good these days even though the cold mornings make me kind of slow but I get warmed up and off I go. Hope all of you with this can find your answer because it's probably different for everyone and takes a lot of trial and error.

This is the best medicine I have seen in a long time ,good for you ,exercise walking.Xanax
quote(Xanax is also sometimes used as the anti anxiety medicine of choice for the treatment of ********. disorders are unexpected pain attacks which may be accompanied in some cases Only your doctor can diagnose pain disorder and tell you whether this would be the appropriate anti anxiety medicine for your particular circumstances. Anxiety symptoms associated with depression are also frequently responsive to Xanax. ) wonderful med for some people also with Fibromyalgia .....Activia is also wonderful...

quote:
(Your Digestive System
Bifidobacterium Lactis
Probiotics
Scientific Proofs)

(Activia® is a yogurt with a probiotic culture, now available for the first time in Canada from Danone. Activia® contains a unique strain of bifidobacteria, called Bifidobacterium (animalis) lactis, or BL RegularisTM.)
I have a dear friend in Toronto and she does both these and has remissed wonderfully.

i have fibromyalgia and have had it sence 1989 got it doctor to tell me what is wrong in 1996 he did after i showed a artical on fibromalgia he tested me and then said i can help you some with drugs but you are going to have live with pain all the time some times it will be better one or two days but it will be bad other days ,i also have scolilsis to. i take darvocet, vicodin, nexium,and maxalt for migrain headache then i got high blood pressuer, take 2 pills for that. there is only one thing i would love to have is a jazzie so i could take my dog for a walk i have not walk him for 4 years for im on a fix income and cant work to make exter money

djensen wrote:i have fibromyalgia and have had it sence 1989 got it doctor to tell me what is wrong in 1996 he did after i showed a artical on fibromalgia he tested me and then said i can help you some with drugs but you are going to have live with pain all the time some times it will be better one or two days but it will be bad other days ,i also have scolilsis to. i take darvocet, vicodin, nexium,and maxalt for migrain headache then i got high blood pressuer, take 2 pills for that. there is only one thing i would love to have is a jazzie so i could take my dog for a walk i have not walk him for 4 years for im on a fix income and cant work to make exter money

I wish I could work too. I have tried but it's that one good day-two bad days thing that gets me. On my good days I feel strong like I can do anything but those bad days, like a truck hit me or even three trucks. I would love to have my independence back because I married late in life I was always very independent and this makes me independent on my husband which I hate, not my husband, the dependency part, ok sometimes I hate him too.

My son will be 38 next month and was told he had it when he was 25....The first year was very bad as they tried to relieve the pain....Luckly he is a VP at his company and was able to work from home when he could not make it into work...Now he goes to work every day...Says the medication is really helping but still has a hard time sleeping...He too was told as he was growing up it was growing pains...Now the drs say he probably had this since he was a young child...

I am so sorry for all the pain most of you are going through - reading this thread just now made me realize that I'm not nearly as bad off as some people. I wish and hope that you all find more relief and help so that you can enjoy life more.

LynnB - I've never heard about the Fiber helping; what do you take to increase your fiber? I'd like to try that as it's a natural solution (I hate taking pills).

Djensen - what's a Jazzie? What kind of dog do you have? Can you get a neighbor kid to walk your dog?

Chance - what is Lyrica?

I hope you all have a pain-less day today or at least lesser pain than usual.

I was wondering if anyone had any advice on how i could talk to my doctor or what questions I should ask about Fibromyalgia. I have been having pain for a long time that is noticebly worse the past few years that has alwasy been attributed to my back problems. In researching Fibromyalgia my symptoms match. Advice?

[deleted by poster for personal reasons]

This is a quote that I had saved (among 43 pages) from a thread on another forum I'm on.

According to international studies mercury is under suspicion as a primary or contributory cause with the following conditions:

Neurologic disease: multiple sclerosis, Parkinsons disease, epilepsy, Alzheimers, ALS og migraine.

Chronic inflammation: rheumatoid arthritis, fibromyalgia, sarcoidosis, Sjögrens syndrome, sclerodermi, lupus, ankylosing spondylitis (Bechterew) and thyroid disease. In addition, Candida must be cited, as well as ulcerative colitis, Crohns disease, multi-allergic syndrome, multi-chemical sensitivity and skin disorders (eczem, lichen planus, psoriasis).

Chronic fatigue syndrome, fibromyalgia and multi-chemical sensitivity have overlapping symptoms, which have a lot in common with mercury toxicity. When leaky gut and sleep deprivation are present, there are pro-inflammatory reactions in the body. Therefore, diagnostic testing must be sufficiently comprehensive to distinguish primary from contributory causes.


Mercury poisoning does not limit itself to only neurological symtpoms.

Just a side note, that mercury, molds, lyme etc can contribute to fibro. A few of my friends have been diagnosed with fibro/cfs and with further testing with integrative or alternative doctos have nailed down those 3 as the prime causes. A lot has been dealt with by diet (gluten free, grain light, dairy free, some soy free).....basically focusing on meats, veggies, fruits and nuts/seeds.

Once the body starts accumulating more toxins than it can rid itself of chronic illness sets in, but it can be beat.

I, myself, do not have fibro but am borderline mercury toxic and have adrenal fatigue and leaky gut as well as celiac (the forum I'm on).

If anyone wants more info please pm me and I'll make sure I track some down or reask on the forum and also give out the web address and thread name.

orlandomiki wrote:My son will be 38 next month and was told he had it when he was 25....The first year was very bad as they tried to relieve the pain....Luckly he is a VP at his company and was able to work from home when he could not make it into work...Now he goes to work every day...Says the medication is really helping but still has a hard time sleeping...He too was told as he was growing up it was growing pains...Now the drs say he probably had this since he was a young child...

My son has always hurt as a child and he's 21 now and I wouldn't be surprised if he finds in the near future that he has this too. I didn't poopoo his complaints as a child like my mother did me though. I really hurt as a kid and to continually be told it's growing pains makes for an angry child.