Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi there, sorry if this topic has been well covered before (Ive been away from this forum for a while but recently suffered a bad relapse and intensification of symptoms)
Ive just been reading on the "Expert Answers" section that Fibro is NOT and inflammatory condition and it differs from Arthritis in this.
On the other hand I constantly have family members telling me that I need to go on a very strict starch free diet (eliminating even many 'healthy' vegetables) because they are convinced Fibro is caused by inflammation.
I have been mostly gluten free and have a very healthy diet (mostly organic) for years now and it seems to have little bearing on my symptoms , although I do avoid white flour, additives, junk foods and fries etc, as they don't help things.
I was diagnosed with Fibro after having viral Meningitis followed by a bad fall when I damaged discs in my neck, so most of my pain comes from neck, shoulders and arms. I have tingling, numbness and sharp shooting pains down my left side, its certainly a nerve type pain. My family suffer from arthritis like pain (burning and stiffness in joints) which sounds like a different type of illness?
The times when Ive felt the best and had a period of relief from symptoms (including the chronic fatigue) was when I lived on and off in Germany. I have a different diet there - certainly not starch free (I eat a lot of the wonderful German bread and cakes, but also enjoy a lot of protein such as meat and cheese).
I would move back there if I could but at the moment Im too unwell.
What do other people think?
Is the pain of fibro caused by inflammation due to starch in the diet?
My gut feeling is that its not that simple and Fibro is a different type of illness from Arthritis. I am getting to the point of avoiding my family due to the constant lectures on how I should change my diet!
I would love to hear others thoughts or experiences, thanks.
Ive just been reading on the "Expert Answers" section that Fibro is NOT and inflammatory condition and it differs from Arthritis in this.
On the other hand I constantly have family members telling me that I need to go on a very strict starch free diet (eliminating even many 'healthy' vegetables) because they are convinced Fibro is caused by inflammation.
I have been mostly gluten free and have a very healthy diet (mostly organic) for years now and it seems to have little bearing on my symptoms , although I do avoid white flour, additives, junk foods and fries etc, as they don't help things.
I was diagnosed with Fibro after having viral Meningitis followed by a bad fall when I damaged discs in my neck, so most of my pain comes from neck, shoulders and arms. I have tingling, numbness and sharp shooting pains down my left side, its certainly a nerve type pain. My family suffer from arthritis like pain (burning and stiffness in joints) which sounds like a different type of illness?
The times when Ive felt the best and had a period of relief from symptoms (including the chronic fatigue) was when I lived on and off in Germany. I have a different diet there - certainly not starch free (I eat a lot of the wonderful German bread and cakes, but also enjoy a lot of protein such as meat and cheese).
I would move back there if I could but at the moment Im too unwell.
What do other people think?
Is the pain of fibro caused by inflammation due to starch in the diet?
My gut feeling is that its not that simple and Fibro is a different type of illness from Arthritis. I am getting to the point of avoiding my family due to the constant lectures on how I should change my diet!
I would love to hear others thoughts or experiences, thanks.
I believe it is way more complicated than they think. It may be a neurological condition that is autoimmune and it isn't really fibromyalgia that causes the inflammation, but another co-conspirator autoimmune condition that hasn't been diagnosed yet. I noticed that most of us have multiple diagnoses. We don't just stop with fibromyalgia.
I hope you feel better!
I think it's a central nervous system issue.
The "inflammation" thing is a very old theory long ago disgarded by all but those with something to sell. There are conditions that can co-exist that are inflammatory, but fibro itself is not.
You seem to have a good handle on what works for you. Now work on finding a good response for your family that doesn't prolong the conversation. "Thanks I'll bring that up with my doctor" is one that works for a number of people. "Thanks I'll do some reading on that" is another.
You know the people involved. You'll figure out what is right for you.
I've tryed many diets and got no real results.
I think I just feel quite frightened and confused at the moment. I have lived with Fibro since 2006 and my symptoms have been pretty stable, with periods of around 80% remission, so I was hopeful things were getting better not worse.
Since having a nasty flu and chest infection last month my symptoms have just got worse and worse to the point I am waking during the night in such intense pain I can't even turn over. The pain is so bad I just want to cry.
Also having lots of weird neurological type symptoms (loss of strength in arms and hands, can no longer hold a fork in my left hand), shooting pain in hands has got worse, can hardly walk, and a kind of 'vibrating' sensation through my legs and lower body too. Its just so strange.
Fortunately, after years of my regular doctor doing absolutely nothing except prescribe anti-depressants, I have changed to a new doctor.
She has referred me to a surgeon (thinking the pain could be caused by the prolapsed discs in my neck) and he thinks surgery wont help but has booked me in for an MRI this week because he says these symptoms need looking into and my last MRI some years back showed some narrowing of my spinal column (or something like that, sorry have terrible fatigue and fibro-fog today)
Has anyone else ever had symptoms like this? I'm reading through all the threads now to see the wide variety of experiences out there.
Thanks again for your comments and support :)
You are not alone.
I live with my 15yr old daughter, it scares her too and she wont talk to me and stays with her friends family a lot to avoid me. Every time I say something about feeling unwell she rolls her eyes and leaves the room. She has been helping out more with meals and housework as I begged her to...but she wont discuss the Fibro with me.
My mother is the most understanding and we talk on Skype a few times a week,but the rest of my family say something like 'oh yes I had Fibro too until I went on a starch free diet'
Well, none of them actually had Fibro....but lots of people seem to self-diagnose flippantly and then self-cure...then suddenly become experts on what everyone else should eat!
(sorry having a bad day here and wanting to rant)
She is the only one in my family that helps me though. The rest of my family I'm so disappointed in how they react to my illness. I moved away from them and closer to my daughter and I have a lot less stress in my life now. Glad you have your mother as support, I didn't have that sadly.
However I had never heard of Fibro before I was diagnosed by a specialist after having an MRI, full examination and pressure points test so I am not just self-diagnosing.
These people have no idea what its really like...they might have the odd day when they feel a bit stiff, and the next day they might be fine, so they apply the same thing to us - have you found that?