Fibromyalgia

hdowney

I'm on amitryptaline to help me sleep. It doesn't do a darn thing!

livemusic4life

hdowney wrote: »

I'm on amitryptaline to help me sleep. It doesn't do a darn thing!

It doesn't work for everyone, just like most meds. It's a game of trying to find the right combination

misstearheus

Has anyone gone to a Physio for Fibro? I know some Physios do a lot of work for the Lymphatic System so I'm quietly hoping that this would assist towards being some help for Fibro too. Don't have money to waste so no funds available here for crappy service or crappy Physios! Anyone go to a Physio in Galway with Fibro and how did you get on?! Please pm me!

It might be different for others, but the way I'm affected personally myself is that the affected areas feel like bruising, and so they have to be pushed in hard to produce the soreness! All-over pain is ever-present too, but byandlarge, the areas have to be pushed in / pressed-on. So, I'm wondering would I be making an error in going to a Physio with this?!? A Physio rubs over the outer layer of skin..... I don't know would they go deep enough in to bring me pain-relief for the way my Fibro is occurring.... Hhmmmm.....

livemusic4life

misstearheus wrote: »

Has anyone gone to a Physio for Fibro? I know some Physios do a lot of work for the Lymphatic System so I'm quietly hoping that this would assist towards being some help for Fibro too. Don't have money to waste so no funds available here for crappy service or crappy Physios! Anyone go to a Physio in Galway with Fibro and how did you get on?! Please pm me!

It might be different for others, but the way I'm affected personally myself is that the affected areas feel like bruising, and so they have to be pushed in hard to produce the soreness! All-over pain is ever-present too, but byandlarge, the areas have to be pushed in / pressed-on. So, I'm wondering would I be making an error in going to a Physio with this?!? A Physio rubs over the outer layer of skin..... I don't know would they go deep enough in to bring me pain-relief for the way my Fibro is occurring.... Hhmmmm.....

In my experience, physios don't do alot for fibre. I have severe problems with the SI joints at the back of my hips and my physio had me rotate my leg out for half an hour, despite me telling her that outward rotation really aggravated my symptoms. I ended up in so much pain that I screamed the whole physio place down and couldn't walk at all.. *modsnip*

misstearheus

Yeah that's what I want to hear, about people's experiences of it with a Session. They are expensive like, and I don't have money to waste. Yeah that's kind-of along the lines of what I'm thinking myself, by default before I go anyplace at all! Like I can't help thinking, if working with someone with Fibro, that they would un-naturally be working the opposite way to what they're used to!! And that could be a hindrance more than a help! Like my general pain is ever-present all over me. And is always sore when pressed in real hard at all the points and sources that induces the pain. Soooo, rather than a quick rub gleaning over my skin, every part of me would need to be pressed in really really REALLY hard I reckon, if there was any chance of bringing about some sort of relief. Soooo I dunno about Physio-therapy being beneficial..... But there's a multitude of other things, needling, cupping..... Loads of thing that might help some way... I just don't have the funds to try them all out!

fighterman

Have all of you people experimented with a wheat free diet? Fibromyalgia is an autoimmune disease and the source of inflammation is often gluten/wheat . Many, many stories of resolution from fibromyalgia by going wheat free. What's to lose by trying?

http://www.wheatbellyblog.com/2015/08/barbaras-wheat-belly-makeover/

fighterman

http://robbwolf.com/2013/03/25/free-fibromyalgia-pain-living-life-fullest/

And another success story!

Tropheus

fighterman wrote: »

Have all of you people experimented with a wheat free diet? Fibromyalgia is an autoimmune disease and the source of inflammation is often gluten/wheat . Many, many stories of resolution from fibromyalgia by going wheat free. What's to lose by trying?

http://www.wheatbellyblog.com/2015/08/barbaras-wheat-belly-makeover/

I've been gluten free for the past 12 years and definitely find it helps my symptoms. It certainly hasn't cured me.

NBates

I live in Cork and diagnosed over a year ago. I too saw various specialists and went on Meds initially. They come with terrible side effects ( depression&anxiety being my worst) The dangers of these drugs longterm really scared the crapout out of me too..... more than the Fibro itself! So I wouldnt recommend meds on any child! Please read read read so you know yourself! I have been seeing a Therapist recently who specializes in Trauma. I realize i need to commit to something regular that will help me through this. She gave me details of a lady by the name of Ray ( She used to have Fibro herself) who offers a Fibromyalgia wellness plan in the city. Met her briefly....about 20mins to get an idea of the work etc ( free of charge) I was BALLING 5mins in. I suppose tears are healing. I left feeling hopeful. Ill def post an update.

cannex

NBates wrote: »

I live in Cork and diagnosed over a year ago. I too saw various specialists and went on Meds initially. They come with terrible side effects ( depression&anxiety being my worst) The dangers of these drugs longterm really scared the crapout out of me too..... more than the Fibro itself! So I wouldnt recommend meds on any child! Please read read read so you know yourself! I have been seeing a Therapist recently who specializes in Trauma. I realize i need to commit to something regular that will help me through this. She gave me details of a lady by the name of Ray ( She used to have Fibro herself) who offers a Fibromyalgia wellness plan in the city. Met her briefly....about 20mins to get an idea of the work etc ( free of charge) I was BALLING 5mins in. I suppose tears are healing. I left feeling hopeful. Ill def post an update.

Think I have fibro - constant pain since I was a child....migraines, sprained wrists, cricks in my neck etc.
Biggest issues are with excrutiating pain in my neck, shoulder blades, tension headaches, restless legs, random shooting pains all over my body.
Kept looking for a reason like nerve damage.
Seized up in pain since I woke up yesterday. Been through an MRI which found very minor issues, physiotherapist told me I had central sensitization and sent e on my way, on solpadol and valium to relax my muscles when pain gets really bad. Ran out of valium so I'm still awake at 4.15am. I refuse to take any anti-depressants, I refuse to take lyrica etc. In actual fact I do not want to be relying on a cocktail of tablets for the rest of my life.
I would much prefer to take above meds as and when nescessary and think why replace pain with other horrible side effects - nope!

I live in Cork too so I'm very curious how you got on with Ray. Starting to feel like I'm going down the alternative route but I dont have the money for it. The HSE is a joke.
I was on a waiting list to see the pain clinic in the mercy, I was told by the secretary to forget about getting an appointment as I could easily be waiting 2 years and told me to go private.
I went to my gp and told her....went there again with awful stiffness and pain in my arms and hands. She mentioned more blood tests and a possible referral to rheumatology.

I guess lots of people feel like a hypochondriac who bothers the dr?
Thats how I feel, not to mention feeling like I'm drug seeking, especially since I refuse to take any of those head messing meds.

sorry long post, just so sick of being in pain and realising there may be no option except painkillers.
Hate asking for my prescription of paractamol/codeine and valium to be refilled, but it works for me!

Graces7

WOndering if anyone has heard of the latest symptoms i have fallen prey to with the M.E. Serious narrowing of the oesophagus so that swallowing solid food is hazardous? I was shocked to be told that this too,along with the daily headaches and acid are auto-immune problems as I had never heard that and assumed it was old age ... Worrying. I checked the long list some kind person has posted on line and sure enough there it is.

Fluffy Unicorn; how is your daughter now ? Hoping you have better news?

Tania Stewart

Hello there - I'm new on the forum. I'm not really sure how to even use the site, I just saw this old thread.

I'm wondering - is there anyone who would know of a good, thorough, empathetic and open-minded rheumatologist and/or " " gastroenterologist (or overall magic doctor !!)who could possibly help me with my 12 year old child? For the last few years - he's had practically constant physical wellness problems, to varying degrees - nausea, aches and pains, severe headache, tiredness. I'm stating the things in order of how problematic they are. He feels unwell a LOT and goes through phases of missing a lot of school. He has friends, likes sports, and WANTS to be feel up to going to school everyday. I'm only saying this because it's been suggested or sometimes assumed, sooo many times, by friends, family, the school, AND medical professionals, even some alternative types of treatment specialists - that he's either anxious and that also manifests itself physically, that he's imagining it somehow, or that he's exaggerating or even making it up either to get attention or to stay home from school, or because he's covering up some serious thing that is bothering him that he's too scared to tell me. Nobody ever gives much reason for thinking these things. Suggesting and reminding one of the psychological possibilities is actually a good thing, I know, but even when I explain how close my son and I are (it's just the two of us in our immediate family/household) and much we talk about everything, and how well I know him - a lot of times people STILL choose to dismiss that, as if they would of course know better than me!!! So far - I've at least come to the conclusion that he has hyper-sensitivity - he has an ADHD diagnosis, and it can co-incide with that, but whatever it does or doesn't have to do with - from everything I've read and heard, and experience with him everyday - most, if not all, of the signs seem to be there, signs of hypersensitivity. And I THINK that with a hypersensitive "base" if you will, a person is more prone to "unwellness" in every sense of the word. Also - I have an aunt with very bad fibromyalgia and a number of comorbid illnesses. Anyway - if anyone thinks they might be able to point me in the right direction, then please try . Thanks in advance, I guess!