Do I really have fibromyalgia?

All your fibromyalgia experiences, questions and answers.

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Do I really have fibromyalgia?

Postby carolad » Tue Sep 23, 2014 9:42 pm

I've been wondering again...do I really have fibromyalgia? My pain is all spine related - lower back, mid back, SI joints, shoulder, neck. I do have some pain and stiffness in my hands but I think that is probably arthritis so not related to my other issues - I'm right handed and the fingers on my right hand are worse than my left.

Anyway, I'm wondering (again!) if my pain is related to my scoliosis (which causes everything to twist and curve all directions!) rather than fibromyalgia. My GP did say to me that he guessed most of my problems were caused by scoliosis, since it was all spine related pain and not pain in my limbs. And I don't get any of the burning or shooting pains some of you talk about.

The one thing that can't really be explained by the scoliosis is my extreme tiredness...but then there are so many other conditions, vitamin/mineral deficiencies, adrenal fatigue etc that can cause tiredness. Other symptoms I get are headaches (but then my skull is tilted to one side of my neck so that could cause headaches), Raynauds, eczema/skin rashes. But again, these are all very general and common things and may not be related to anything else.

I know I will never know for sure and it doesn't actually make any difference. Whatever the cause, I just have to try and manage the symptoms as best I can. But I was just wondering what your thoughts were? I think I remember reading somewhere that if you only had spine related pain, then it wasn't fibro...
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Re: Do I really have fibromyalgia?

Postby aziriphale » Tue Sep 23, 2014 9:55 pm

I also have scoliosis

and it does sound to me like you have fibromyalgia as well, i suffered for years with similar symptoms to the ones you described things have been worse for me last couple of years however, I noticed for years how everything got blamed on my scoliosis when its actually a combination of the two
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Re: Do I really have fibromyalgia?

Postby denys » Tue Sep 23, 2014 10:35 pm

All I can suggest is another visit to your GP to ask and see if they will run some more tests to see if the fatigue is the result of something else good luck at getting some answers :-D
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Re: Do I really have fibromyalgia?

Postby carolad » Tue Sep 23, 2014 11:08 pm

denys wrote:All I can suggest is another visit to your GP to ask and see if they will run some more tests to see if the fatigue is the result of something else good luck at getting some answers :-D


I've had all the usual tests and all have come back negative. The only one I haven't been tested for is Vitamin D, but that doesn't seem to be something they offer routinely.

The other thing I didn't mention was I am gluten intolerant - it started about a year and a half ago. It gives me a rash but I'm wondering if it could be the cause of the fatigue. I've been gluten free for over a year but I did read it can take up to two years for your digestive system to recover after going gluten free.

Oh who knows? I don't expect I'll ever really know :) x
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Re: Do I really have fibromyalgia?

Postby Theresa34 » Wed Sep 24, 2014 9:29 am

Did your gp preform the trigger point test on you? This and my symptoms are what led my rheumy to diagnose fibro. I was diagnosed with arthritis last year and though that that what was causing me pain and fatigue. I've since been told its in remission and I now have fibro too. As you know from reading the forum that we all have varying pains and fatigues. So if yours or mine aren't as 'bad' as another person here, it doesn't mean we dont have the condition. We also all deal with it in different ways. As for vitamin D, my rheumy ordered that test and I was very deficient in it, so I now take a vit D pill every morning.

Gluten free wise how were you tested for that? Or is it a process of elimination? My daughter has been gluten free for 3 yrs now I think. Shes a coeliac. She didnt have symptoms per say, it was by chance she got tested. Shes always had belly issues but most of it is down to going to the toilet and having to go into hospital a lot for it. But after a year of being gf the consultant said that gluten wasnt the cause and it was separate. So hard to say when you 'should' be better gf. I too have heard two years.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Do I really have fibromyalgia?

Postby carolad » Wed Sep 24, 2014 10:41 am

Theresa34 wrote:Did your gp preform the trigger point test on you? This and my symptoms are what led my rheumy to diagnose fibro. I was diagnosed with arthritis last year and though that that what was causing me pain and fatigue. I've since been told its in remission and I now have fibro too. As you know from reading the forum that we all have varying pains and fatigues. So if yours or mine aren't as 'bad' as another person here, it doesn't mean we dont have the condition. We also all deal with it in different ways. As for vitamin D, my rheumy ordered that test and I was very deficient in it, so I now take a vit D pill every morning.

Gluten free wise how were you tested for that? Or is it a process of elimination? My daughter has been gluten free for 3 yrs now I think. Shes a coeliac. She didnt have symptoms per say, it was by chance she got tested. Shes always had belly issues but most of it is down to going to the toilet and having to go into hospital a lot for it. But after a year of being gf the consultant said that gluten wasnt the cause and it was separate. So hard to say when you 'should' be better gf. I too have heard two years.


He did have a quick prod at me :shock: Though again, all the places I am sore could be because of the scoliosis. People think of scoliosis as a curved spine...but it is actually much more than that...my spine is curved and twisted, my pelvis is twisted, my ribcage is twisted, my right shoulder is pushed further forward, my head is tilted...so all this could cause muscle tightness and pain in my back, neck, shoulders, hips...

I have been taking a Vitamin D supplement anyway for the past couple of months. I have been feeling a bit better recently - whether it is because of the Vitamin D or other changes I've made, I'm not sure...

I was tested for coeliac and that came back negative. But I just know myself I have a gluten intolerance because I get a horrible red lumpy itchy rash around my mouth and cracks in the corners of my mouth when I eat gluten. It took me a while to work out what was causing it - I cut out just about everything in my diet and then slowly added one thing at a time back in. The first time I ate bread again, the rash appeared. I wasn't sure at first if it was wheat or gluten so I did a bit more experimenting and found out it was definitely gluten. The thing is that gluten intolerance can cause fatigue, muscle aches etc...so I'm still wondering if that may be the cause of my fatigue. I suppose time will tell...if that was the cause...I should start to feel better in time.

It is like trying to piece together parts of a big and very complicated jigsaw!
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Re: Do I really have fibromyalgia?

Postby Theresa34 » Wed Sep 24, 2014 2:03 pm

I'm not entirely sure what the difference would be between a gluten intolerance and coeliac. But as a coeliac my daughter isnt allowed not only gluten but wheat, rye & barley. Perhaps those added ones are causing you grief? I know you can have coeliacs with a neg blood depending on whether you were eating gluten regularly at the time of the test. My daughter was positive on blood then had to have a biopsy for the so called gold standard and of course, that too was positive. My friend had four neg bloods and dr reluctantly gave her a biopsy which turned out to be positive!
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Do I really have fibromyalgia?

Postby Harrison264 » Wed Sep 24, 2014 2:33 pm

I put my tiredness down to fibro but sleep apnoea was diagnosed just over a year ago. I sleep with a cpap machine now and my fatigue is much better. I still have pain but at least I can drive without falling asleep now! Good luck with your detective work; I hope you find answers. Xxx
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Re: Do I really have fibromyalgia?

Postby carolad » Wed Sep 24, 2014 9:48 pm

Theresa34 wrote:I'm not entirely sure what the difference would be between a gluten intolerance and coeliac. But as a coeliac my daughter isnt allowed not only gluten but wheat, rye & barley. Perhaps those added ones are causing you grief? I know you can have coeliacs with a neg blood depending on whether you were eating gluten regularly at the time of the test. My daughter was positive on blood then had to have a biopsy for the so called gold standard and of course, that too was positive. My friend had four neg bloods and dr reluctantly gave her a biopsy which turned out to be positive!


It is all very complicated! Apparently you can have a wheat intolerance or a gluten intolerance (they are not the same; both are different from coeliac. I know I have a gluten intolerance because I get the rash if I have anything with gluten in it ie rye and barley as well as wheat. So I now follow a completely gluten free diet (unless I take some by accident).

Coeliac disease will cause damage to the intestines and often (thought not always) stomach problems. Gluten intolerance won't damage the intestines so isn't as 'serious' a condition....although it can cause similar symptoms to coeliac.

I've read that a lot more people are gluten or wheat intolerant now because of the modern varieties of wheat we use - it isn't as easily digested as older forms of wheat. Also, the western diet is very heavily based on wheat so we are just eating too much of it and it is overloading our system. This is why it often develops in middle age....our bodies put up with it for years but then just rebel and say 'I've had enough!' My diet would very much have been wheat based - lots of bread, pasta etc. I can see now it wasn't the best diet....even though I thought I was being healthy because I always went for wholemeal bread, wholewheat pasta etc.

I've heard some people saying that they felt a lot better 2 weeks after going gluten free. It made no difference to me, other than not having that horrible rash round my mouth! But then maybe it does take longer for some people to feel better.

Harrison264 - that's interesting. I have wondered about my sleep too. For years, I didn't sleep well because of my back pain. 3-4 hours sleep a night was the norm. Some nights I would have had an hour's sleep....and still gone into work the next day. My back pain is more under control now and I take Amitriptyline at night which helps me sleep. So I'm sleeping for much longer now...but still wake up feeling as tired as I had been on an hour's sleep! The Rheumatologist I saw said that I'm not getting the 'right type' of sleep ie the deep sleep which leaves you feeling more refreshed.

Thanks for your replies :)
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