Fibromyalgia

dlofnep

I had Fibro for 2 years in my legs. I found it that I got flares from gluten. I cut out gluten out of my diet, because it made me very ill. Don't get flares anymore. I found that laying down alot made it worse.

Chaz

dlofnep wrote: »

I had Fibro for 2 years in my legs. I found it that I got flares from gluten. I cut out gluten out of my diet, because it made me very ill. Don't get flares anymore. I found that laying down alot made it worse.

What did the 'flares' feel like?

dlofnep

Chaz wrote: »

What did the 'flares' feel like?

Dull burning pains in my leg muscles and around my knees.

i-digress

Chaz wrote: »

I am still a bit uncertain if the diagnosis is accurate and Im thinking along the lines of thyroid problems. My mom had her's removed when she was younger - I think it was producing too much of whatever it produces.

If you read about under active thyroids then it almost sits similar to FM ... or what Ive been struggling with at late.

What side effects do you get from Ami? What times do you take the dosages?

PM if you prefer not to discuss publicly - thanks.

Oh my God, it's like you're reading my mind! I'm going to my doctor this week and I'm going to ask him to send me for tests to determine my levels of free T3 and T4 to see if I have a thyroid problem! I get panic attacks and a lot of anxiety and I think this might be a contributing factor.

As regards side effects I get dry mouth and nausea, but I'm on motilium for secondary IBS which deald with the nausea for the most part. I take mine at night time. What about you?

Chaz

i-digress wrote: »

Oh my God, it's like you're reading my mind! I'm going to my doctor this week and I'm going to ask him to send me for tests to determine my levels of free T3 and T4 to see if I have a thyroid problem! I get panic attacks and a lot of anxiety and I think this might be a contributing factor.

As regards side effects I get dry mouth and nausea, but I'm on motilium for secondary IBS which deald with the nausea for the most part. I take mine at night time. What about you?

Mmmm - maybe I am on the right track ... will see what I can get done. The NHS is a bit different from the Irish system.

I take mine around 19h30 - I find if I take it later I struggle to wake up on time for work. If I take 50mg I struggle even more. Interestingly the original use of Ami was for depression, 150mg!!!

I also suffer from some of the other side effects, one of them being anxiety of sorts. For example, if my desk phone starts to ring, even if Im expecting it, I get a weird fright, almost like a lagged sense of delay and 'oh crap, the phone is ringing' etc. It also makes me feel 'slow' but seems to keep my sense stable whereas if I dont take them, I cant sleep properly and are a lot more up and down.

Chaz

dlofnep wrote: »

Dull burning pains in my leg muscles and around my knees.

Do you or did you ever get the sensation that your skin was burning? Like sunburn or as if someone was holding a flame just below it?

dlofnep

Chaz wrote: »

Do you or did you ever get the sensation that your skin was burning? Like sunburn or as if someone was holding a flame just below it?

No, not skin.. It felt deeper than that. Like muscle and deep tissue. It was really annoying. If I eat something with gluten, I'll get within 20 minutes.

Chaz

dlofnep wrote: »

No, not skin.. It felt deeper than that. Like muscle and deep tissue. It was really annoying. If I eat something with gluten, I'll get within 20 minutes.

Mine is different and this is why Im not 100% certain its FM. Then again, I do struggle with soreness but Im not sure if this is natural (getting older etc).

dlofnep

Chaz wrote: »

Mine is different and this is why Im not 100% certain its FM. Then again, I do struggle with soreness but Im not sure if this is natural (getting older etc).

I wasn't certain either. My doctor & hospital suggested that's what it may be. It seems very hard define. Many don't take it seriously, or are completely oblivious to what it is. I had to read up myself - and notice that alot of people with flares said wheat and stuff made it worse. So I just tried a GF diet - and felt much better afterwards. I found out months later that I was non-coeliac gluten-intolerant.

In fairness though - I tend to get very ill alot lately now for anything. My poor immune system isn't the best

thecelt

wondering if anyone has found that any natural supplements help with the tiredness of fibromyalgia?

dlofnep

Didn't help me. I was extremely tired all the time. I got better with a diet change.

Chaz

dlofnep wrote: »

Didn't help me. I was extremely tired all the time. I got better with a diet change.

Thats my understanding too. I had a friend look at all the food areas that cause problems for ppl with FM. I dont have it at hand (I dont generally follow it) but it was more about diet change than supplements as such.

dlofnep

I'm not an expert, so I can only say what helped me as an individual. I found that cutting out gluten, and not laying around all day made me feel much better. The more I rested, the more tired I was. I started going for a jog with my puppy and started eating healthier - all my pains are gone, and I'm not tired anymore. Naturally I get tired like anyone else, but only after a hard day's work

I wish there was more of an understanding of this. I had 10+ blood tests taking - and the doctors just seemed completely ignorant to what was wrong. I'd advise everyone to get a skin prick test done to test for food allergies (don't go to allergy test centres, most of them don't do a skin prick test - go to your GP and request that he send you for one in hospital), cut whatever you are intolerant to out of your diet - It took me a week or two before I started noticing an improvement as it takes time to heal your body - but stick at it, and hopefully you'll see improvements too.

Don't take pain medication. Try go cold turkey.

i-digress

dlofnep wrote: »

Don't take pain medication. Try go cold turkey.

This is so true. I don't take pain medication daily, I use heat to try to get most of the pain to abate. When I'm bad though, I do use painkillers. The big plus is that the less you use painkillers, the more effective they are.

I'm in the middle of a flare right now

dlofnep

Try a fruity & veg diet for 5 days, and see how you feel. It will eliminate any possible food allergies. It's tough because the body craves carbs - but try it and see how you feel. Everyone should be trying anything that they haven't tried yet to see if it helps.

i-digress

To be honest, I don't find that food has much of an impact on my symptoms. The real culprits for me personally are damp weather and stress.

LegacyUser

i-digress wrote: »

To be honest, I don't find that food has much of an impact on my symptoms. The real culprits for me personally are damp weather and stress.

stress can affect it alright as it can ME/CFS, which some say are two sides of the one coin

LegacyUser

Unregistered wrote: »

Well all I can say is i hope your own GP is more understaning than my own.

I'm convinced I have FM but my GP is being a complete pr1ck about it and has told me out straight he thinks I'm swinging the lead.

I have asked for referrals to all sorts of consultants with no avail.

The pain and discomfort i've experienced for the last few years are indescribable and he just won't listen.

I've tried approaching the different doctors on my own but they are loathe to see me without a referral.

If anyone can advise me the next step i should take I will listen.

Best of luck OP because i know what you're going through.

Some GP's will not accept it and I have read or heard of one who said it was not a helpful diagnosis. The sad thing is he/she could be right because of all the hassle you have to go through to get heard or taken seriously when energy is low. I have pain myself and could be it but see no point in mentioning it. Too tired for all that hassle when at the end of the day there does not seem to be much, if any treatment. Is it allowed to mention painkilers by name? If so what did people find good?

thecelt

has anyone found anything that helps with the constant tiredness?

i-digress

I find eating low GI foods can help a bit, but otherwise no. The fatigue is my worst symptom. I can put up with the pain, but I hate the fatigue.

LegacyUser

thecelt wrote: »

has anyone found anything that helps with the constant tiredness?

i know someone who was helped by high protein diet, fish etc

dlofnep

thecelt wrote: »

has anyone found anything that helps with the constant tiredness?

When I cut out gluten, and started eating red meat, fish, veg (avoid potatoes) - lots of broccoli and fruity (apples and oranges) - I got my energy back. I was bedbound for ages until I sorted my diet out. I'm not saying it will work for everyone, but it's worth a shot.

thecelt

Am thinking of getting a bicycle, am hoping getting a bit more active might help out, anyone reccommend or disagree with cycling to help

i-digress

thecelt wrote: »

Am thinking of getting a bicycle, am hoping getting a bit more active might help out, anyone reccommend or disagree with cycling to help

I don't know if cycling helps, but exercise does. I just wasn't forcing myself to the exercise I needed, which was part of the reason I got a puppy. We've worked our way up to half an hour walks a day, when she's fully grown she'll need an hour a day. She's a labrador, very high energy, so if she doesn't get exercise she gets very hyper and chewy. It's definitely an incentive.:D

thecelt

good to hear, it is so easy to say, yeah will start tomorrow. We were going to get a puppy, but have a baby on the way so have postponed the puppy

i-digress

thecelt wrote: »

good to hear, it is so easy to say, yeah will start tomorrow. We were going to get a puppy, but have a baby on the way so have postponed the puppy

Congratulations! I think that's a wise decision re the puppy. My girl is only four and a half months and she's like a super strong bouncy toddler! It's crazy:rolleyes:

thecelt

Thanks, do u find exercise helps much? am kinda getting sick of just being so drained all the time

i-digress

I know the feeling. The walking doesn't really help the fatigue, but it helps my mood. It makes me feel like I'm doing something 'normal', you know? I can't walk very far without my stick anymore. I'm only in my twenties, so it really gets me down.

I'm trying lots of things to help. I feel like such a burden on my husband, and that gets me down. I could cope with the pain if the fatigue went away. The fatigue often makes me feel like I can't function like a normal person.

Do you find anything helps? I'd imagine with a baby on the way you are extra eager to get some energy back.

thecelt

I take glucosamine sulphate and cod liver oil everyday and at the momement am taking Berocca Boost.

star-pants

Used to take Glucosamine&Chondroitin supplements myself and they helped a bit with my joints.
The tiredness is what really gets to me too. Not sleeping, no matter what I try, even when I do fall asleep it's broken/restless/unhelpful. You just feel like a zombie!

I've two little dogs too and I walk them every day (if I can). At the moment I'm also walking to and from work, which sometimes is tough going if I'm very tired but I feel like I'm getting some exercise. I do stretches n stuff when I'm well & they help my mood more so than the tiredness/pain.

thecelt-congrats btw on the bike thing, I was never good on a bike(always fell!).
But at the gym I tried those bike things and I couldn't do it for long as it was too much on my knees. However, if you can cycle without much pain I'd go for it, because it'd help keep you fit and hopefully would make the muscles around those joints stronger.

i-digress, I can understand where you're coming from with the burden bit, I hate when I'm with friends/boyfriend and I'm sore/shattered/can't do things/have to cancel. I tend to try and hide some of my pain when I'm with some people because I don't want seem like I'm complaining or looking for attention. And tbh, it worries me that someone with me long term would have to take that on, take me & my illness. BUT on the other hand, I see my parents, my mothers got R.A. pretty bad, has had it for the last 25+ years, and my dad has always been there for her. Always supported her, always done anything necessary, never complained (unless she does something stupid like cuts the grass/over works and ends up sore lol) and they're together 30years with 4 children and still in love (most of the time :P )

I think you have make yourself believe that your partner is with you no matter what you have and that being ill isn't something you have particular control over and whilst I'm sure it's tough for them at times, it's probably more that they dislike seeing you ill/in pain rather than 'oh god would she ever get better'. It's something that I know I need to make myself believe and accept more.