Just diagnosed with Fibromyalgia. Could use some support.

[grayarabpony]

If you’re better now it doesn’t matter, but what has helped me was tramadol. I can only take one a day or I get motion sickness. I don’t know what percentage of fibro patients tramadol is effective for though. Muscle relaxers too, although muscle relaxers can really only be taken at night by many people, if you want to be functional. Heavy duty narcotics help but are out of the question for regular use.

I have taken Zoloft before and it basically made me very sick – more sick than I was before.

In the middle of a flare the last person I’d want to see is a chiro, but I have limited experience with chiros and it wasn’t positive. A message or physical therapist either unless they were very gentle.

It sounds like we may have different kinds of pain? – my joints don’t hurt exactly, just everything does. Regular stimulus feels like pain. If I’m out in the garden getting stabbed by thorns hurts at least 4X as much as usual for example.

[Bedazzle]

Yeah, it’s very possible that we have/had different types of pain. I had a lot of joint pain, but the joint itself didn’t hurt, if that makes sense? It was all of the tendons and muscles right at that point that hurt. So for awhile I couldn’t lift either of my arms because the muscles to lift them were so aggravated that it made my shoulders and collar bones feel like they were on fire.

I never had “amplified” pain, meaning something that used to hurt only a little hurt a lot now, more just I was more sensitive. On my bad days, a breeze on my skin felt horrible and made me just want to curl up in a ball. Being in bed was even uncomfortable because just shifting my weight around was excruciating.

[grayarabpony]

Our pain doesn’t really sound that different, although my whole muscle hurts, not just at the joint. I know what you mean about a (cold wet) breeze on your skin.That can be very painful.

Another suggestion I have for fibro sufferers is to get out in the warm sunshine. That can really help!

[beaujolais]

I can’t wear long sleeves much, they hurt. And loose, soft ones too, I mean. The times I try to I have to often go change my shirt cause it starts hurting. Jeans - forget it, for the most part. (NYDJ are the best, though.)

[grayarabpony]

Sonomacounty, that sounds terrible. I am sorry.

[beaujolais]

Thanks GrayArab. Neck & shoulder pain now have to take a back seat to the lumbar discs I trashed at work. Craziness. &±#@$&!!!

[romewhip]

[QUOTE=grayarabpony;7501960]
Our pain doesn’t really sound that different, although my whole muscle hurts, not just at the joint. I know what you mean about a (cold wet) breeze on your skin.That can be very painful.

Another suggestion I have for fibro sufferers is to get out in the warm sunshine. That can really help![/QUOTE]

Oh absolutely! I have trouble knowing when I’m cold, and since it’s always cold here in western WA I get a lot of cramping and aggravation of pain when I’m cold. Warm sunshine is the best medicine, if you can get it. I’ll sit out in the sun for a while even when it’s not that warm, sunshine is rare here. With a coat on I’ll warm up and loosen up nicely, and it feels so good.

[Nestor]

I was diagnosed with Fibromyalgia in high school, I believe I was 14 (I’m now 24). I was miserable prior to my diagnosis. There would be points that I couldn’t even walk class-to-class (say, 200 feet?). I spent the first year and more of high school in excruciating pain, with a lot of frustrating days.

What has significantly helped my well-being is (a) getting a good night’s sleep, and (b) eating well. I got a generic tempurpedic bed shortly after my diagnosis, and it has likely made the biggest impact because I get a much better night’s sleep in that bed than a typical mattress of 10 years ago. Another major trigger for me is sugar. I do believe I don’t have a particularly severe case of FM, or at least I’m not that sensitive, because I can eat sweets, just not in major excess (so as a teen with a wicked sweet tooth, I really felt the repercussions… sweet tooth hasn’t changed, but I’m more aware now).

Another trigger is supposed to be over-exerting yourself, but it hasn’t been a big problem for me. But something to be careful of.

Unfortunately, no prescription meds ever helped my pain, so I can’t give you any helpful feedback in that department.

What helped me figure out what was triggering my pain was keeping a food/exercise/sleep/pain journal. Keep track of everything and you may start to see a pattern of triggers, which you can then avoid/manage.

I haven’t done much research into the latest on the disease, so it doesn’t hurt to read around and get ideas of various triggers so you can try to manage your life.

Best of luck, I can sympathize.

[Paige777]

Wow, so much information here! It’s good to hear what’s worked for everyone.

I’m still hanging on; trying to keep myself active. I have been very active (running, walking, riding, hiking almost every day) but this winter has been brutal and I haven’t been out nearly as much as I usually am. Thankfully we have some warmer weather now, and I managed to sit on my mare and walk around yesterday and today.

Right now the fatigue and the pain seem to be my biggest enemies. No matter how much I sleep, I still feel like the walking dead the next day. And I ache, constantly. I still play in one orchestra that rehearses once a week, and this week I had to leave the rehearsal early - I couldn’t hold my flute by that point, and just sitting in the chair was agonizing. Hoping for a better week next week.

[Jingo-ace]

I have found this site to be quite helpful… maybe you will too.

http://fibromyalgia-facts-fictions.com/articles.html

[Paige777]

Jingo-ace, that is an awesome site! Thank you for sharing it - I’ve bookmarked it and will definitely be reading it over the next few days.

[_Teddy]

Email me or add me on FB if you wanna chat, im not fibro, but have experimented with tack ect and know alot

Tasha cote

[Henjen]

I see that this original post was almost a year ago but I thought I’d mention d-Ribose which I use and think really makes a difference. Get the book From Fatigued to Fantastic and it will tell you why and how to use it. I also take Cymbalta and will second what someone else said about cyclobenzaprine (Flexeril). That was one of the pieces of the puzzle that really made a difference for me. Hope you’re adjusting by now but wanted to tell you about the d-Ribose.

[SuzieQNutter]

If you semd me your email addresz I will send you an ebook. From memory tye rider had fibromyalgia.

[cheval_convert]

[QUOTE=LauraKY;7495077]
I’m curious for those of you diagnosed with fibro. Do you then stop looking for a cause? After all fibromyalgia is just a constellation of symptoms, not a disease.

I’m asking as one diagnosed with fibromyalgia that turned out to be Lyme Disease.[/QUOTE]

I have a friend who was also misdiagnosed as having fibromyalgia when it was in fact Lyme disease. She now has multiple symptoms that will never completely go away because of the effects of long term Lyme.

[camohn]

I did not read all the replies, so apologies in advance if some stuff is repeated.
First off, it is a syndrome. It encompasses a lot of different issues. Not just fatigue and muscle joint soreness…although those two are the best known. Other things often associated with it are circulation issues ( cold, esp feet), skin hypersensitivity, GI problems (diarrhea/ constipation or fluctuation between the two and medication sensitivity / difficulty with vitamin absorption), cardiac issues, thyroid problems, insomnia, depression. For as much as Cymbalta loves to advertise being “the” FM medication it helps maybe half the people that try it and in no way helps all the other symptoms.
Cold feet and sensitive skin: wear socks. All the time. At night is the worst, use an heating pad. Not an electric blanket: for one the weight you will find irritating, and heat coming from the bottom up works better. You want one of the under you mattress pads. Use a blanket bar at the foot of the bed to keep the weight of the sheets off your legs/ feet. Use light but warm sheets/ blankets/ clothing…
Muscle cramps: Massage is best. LIght and gentle effleurage, not those rolfing deep massage things. muscle relaxants on occasion if its bad.
GI problems: eat like you are diabetic… not one big meal but several small ones ( grazing/ small plates) so as not to overload the gut at once. Avoid highly processed foods like sugar and additives/ preservatives. avoid artificial sweeteners like the plague. Aspertame usually does a great job of aggravating it. take vitamin supplements, especially calcium. Calcium is an important part of neuro and cardiac fuction, and not absorbed well with FM. Try to find vitamins with liquicaps. They absorb better. The problem is with the base material the pill forms are in , not the vitamins themselves. eat lots of veggies and high fiber foods to keep the imperfect gut moving along as well as plenty of fluids. fruits are good if constipated, bad if you have diarrhea so choose accordingly. Certain herbal teas help: mint, black cherry, licorice/ anise ( if you like the flavor…which is usually a love / hate thing for folks…they really like it or really don’t). This disease will force you to eat incredibly healthy! Proccssed foods are not good for anybody, but with FM it is far more important. Your body truly cant handle artificial crap ( colors, dyes, preservatives, sweeteners etc).
Cardiac: other than taking calcium not much you can do there except consult with a cardiologist if its an issue.FM is a disorder that primarily affects the vagus nerve, thus the heart and GI issues.
Thyroid: its usually the parathyroid (which does not show up on regular thyroid tests) so same there…doc has to manage that one.
antidepressants ( like Cymbalta): although it is certainly depressing to have FM its not all about that. Antidepressants seem to have some “off label” benefits for FM management. Bear in mind there are lots of antidepressants and Cymbalta is not the only one…so if that does not work try a different one. And after a while they all stop working so you need to take a drug holiday either stopping or using a different one
Fatigue: pacing yourself is key, If you overdo it you will pay for it. Break things up…do a chore, take a break ( if not actually resting then do something that uses a different muscle group.) . Citrus juices and apple juices help perk you up…so use in am but not in the evening when you want to go to sleep.
Insomnia: meds and lavender. Real lavender oil like sachets help. Not artificially scented stuff, has to be the real deal. At bed time:keep a slow digesting food in your stomach to even out the gi issues: dairy is ideal like cheese as it is slow digesting with the protein and has calcium in it. Peanut butter or other nuts is good too…takes a while to digest.
Hopefully your rheumatologist is also a FM specialist. If not, find one. Most rheumatologists are in no way experts on the management of FM. Back in medical schools 20 years ago it was a topic poorly understood and barely touched upon. EVEN among medical professions. And only a little better now. Its more of a specialty thing even within the profession.
Tramadol and Flexeril are often useful. both come with the side effect of potentially making you tired/ groggy ( not like you want that with the FM already causing fatigue) but sometimes the not being in pain tradeoff is worth it. The thing is DOSAGE. Because peeps with FM are often hypersensitive to meds what is a “normal” dose for Joe Average may be too much for you…so its generally a good idea to start on very minimal dosage.
exercise is important but in moderation. The rule is if it hurts ( more than usual don’t do it. It is not no pain no gain. If you push into pain, you will just get more pain and it will take even longer to settle down.

[camohn]

A little history on the disorder: it is a disorder. AKA a constellation of symptoms. It affects 90% women. A few men get it, usually ones with a VERY strong family history of it, like the women on both sides or all their aunts had it. its hard enough to diagnose in women, the men that have it are even slower to get diagnosed. It is affected by hormone levels: it is usually exacerbated at menopause. So sorry to the young ladies out there with it…it will not get better with age. Estrogen based treatments are the most effective ones for ladies that are older. For that reason it is most commonly diagnosed at age 40…when the symptoms worsen.Its not that it was not there, there is a very strong genetic component and it was probably always there.If you talk to relatives you will almost always find someone else in your family with it, usually female. That does not mean that the know they have/ had it. Especially with older relatives like grandmothers. For one thing it wasn’t diagnosed, and for another there was often the idea you don’t talk about your problems. But often with digging you can come up with "grandma was always tired or complaining of her rheumatism ( an old time catch all for aches and pains, not necessarily mening rheumatoid arthritis like it means now). Usually with 20/20 hindsight the symptoms were there all along anyway. Folks just coped better when younger. And very often they HAD been to doctors for years for assorted individual items. Either the doctor believed them and treated each as an individual problem not as a symptom of a bigger issue or ( often) thought they were hypochondriacs. As noted the vagus nerve is generally involved in the neuro irritation. How the spasms work: normally when you turn your head to the left the muscles in the left side of your neck contract and the ones on the right relax to allow it to move. With FM the muscles misfire: both contract at the same time causing everything to lock up. The most helpful thing with this is biofeedback training. You CAN retrain the muscles with effort. It takes time, patience and a physical therapist with a special biofeedback training unit.

[camohn]

In young folks it is often diagnosed because of a stressful incident. Stress is the single biggest trigger for FM flareups. That can be physical or emotional. Most often it is physical (car accident, fell and broke something etc) and aside from the initial injury ( say a knee injury) suddenly all sorts of other crap starts to plague them too. But…emotional stress like financial strain, a divorce or death of a parent etc can do it too.

[camohn]

on the insomnia: also try melatonin and tryptophan supplements from the health food stores.For nerve irritation magnesium and B1 offer some benefits