A newbie needing help!

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A newbie needing help!

Postby Alness » Thu Aug 14, 2014 2:02 pm

Hi folks,

I've just recently been diagnosed and have lots of questions but one is more fundamental than all the others:
Do I have FMS?

The main reason I'm unsure is that I don't really have all that much pain. At least no more than I think would be normal for a 51 year old bloke who's played a lot of sport and was born with a spinal issue.

I have two main symptoms: one is tingling - throughout my body from time to time. The other is by far the biggest issue for me and that's what I gather people refer to as fibro fog. For me this means having what feels like a premanent flu feeling in my head. This comes and goes in severity but is worsened always by concentrating - particularly using the computer. I struggle to do an effective days work as by lunchtime my head is useless. This has been going on for about eight months. I've had every test available - of my heart, chest, blood and even a brain scan - all were fine.

I wondered if I had CFS but in fact my body isn't tired - I can still exercise - it's my brain that's contantly tired.
I've been presibed duloxetine which I've been taking for two weeks now and no change so far though I understand it can take longer to work.

You guys are the experts. Do you think I've got FMS? Even without the widespread pain?
Talking of experts: is there a doctor (preferably in Scotland) who anyone could recommend who has expertise in FMS?
Well that's all from me just now. Any help and opinions would be very gratefully received.
Al
Last edited by FluppyPuffy on Mon Aug 18, 2014 3:40 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: A newbie needing help!

Postby rich44 » Thu Aug 14, 2014 3:18 pm

Well the "typical" definition of fibromyalgia is 11 out of the 18 pressure points when depressed cause pain to make you flinch or shout out.

Having said that everyone seems to have a different set of symptoms.

What dose are you on of duloxetine? Could be it needs increasing your gp would probably look at that around this time, maybe another week you can go up to 60mg a day.

Have you had your vitamin D levels checked?
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Re: A newbie needing help!

Postby denys » Thu Aug 14, 2014 8:46 pm

Pain has to be present in all 4 quadrants of the body for a period of greater than 3 months, so without pain it would seem you dont fit the criteria :?: :?: :?: :?: :?:

That said although we are experts on our own FM we arent medical experts so cant give you any definitive answers, to find a good FM doctor look to see if you have a support group in your area. The members there may be able to help you in that area, another way may be to ask at your local hospital, preferably the rhuematology dept.

:welcome: to the forum and if it is Fibro you have then hopefully we can give you support.
Denys

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Re: A newbie needing help!

Postby *Lisa* » Fri Aug 15, 2014 8:38 am

Sounds like CFS to me.

When i was diagnosed with CFS the consultant made a point saying the tingling was due to CFS. Then you have the Fog & Fatigue.

Fibromyalgia is muscle pain & stiffness on top of the fog and many other symptoms. As denys said you need to have chronic pain for at least 3-6 months before they consider a diagnoses.
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Re: A newbie needing help!

Postby Alness » Fri Aug 15, 2014 11:09 am

Thanks folks,

But the thing is that the medical profession do think I have FM rather than CFS because I don't really have bodily fatigue (I run three times a week). But then I don't have the pain for FM. I do have the, quite debilitating, head fog and the tingling. So which is it? Aargh!
Any more thoughts and opinions would be very gratefully received.
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Re: A newbie needing help!

Postby *Lisa* » Fri Aug 15, 2014 12:32 pm

Fibromyalgia is chronic pain.

No pain then no fibro.
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Re: A newbie needing help!

Postby rich44 » Fri Aug 15, 2014 2:12 pm

I do sometimes wonder if fibromyalgia, me, cfs , pvfs could all do with an umbrella term a bit like aspergers.

You could setup some standard questions and end up with say a 3 digit score based on say pain, fatigue and mental issues (like fibro fog) that's just a quick 2 min think I thought of and obviously it'd be waaaaay more complex than that but it'd be much better than just a acronym or single word.

We all seem so unique symptoms wise it needs a more fluid descriptor
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Re: A newbie needing help!

Postby denys » Fri Aug 15, 2014 10:59 pm

I get what you are saying Rich but Lisa is right no pain = no fibro, there has to be pain otherwise it is something else :-? :-? :-? :-? :-? :-?
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Re: A newbie needing help!

Postby Alness » Sat Aug 16, 2014 10:43 am

Wow! : I go to a hospital and get diagnosed with something. Obviously, having been ill for eight months I'm feeling pretty low. I go on a forum to find out more and the response is interesting to say the least. Your response, Lisa, was blunt to say the least and, along with that of Denys certainly makes someone tentatively feeling their way towards some understanding of their illness feel pretty unwelcome. Like it's a closed shop if the symptoms don't conform to your opinion. I know I did ask, but a little sensitivity would have been nice. Thanks Rich, though. My personal opinion, for what it's worth, bearing in mind my ignorance, is that there appears to be a lot of overlap between FM and CFS and that what I have would seem to be something in the general area of those two syndromes whether it conforms closely enough to one or the other.
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Re: A newbie needing help!

Postby rich44 » Sat Aug 16, 2014 10:54 am

denys wrote:I get what you are saying Rich but Lisa is right no pain = no fibro, there has to be pain otherwise it is something else :-? :-? :-? :-? :-? :-?


To be fair the OP didn't say pain free completely now.

But that was the point I was making it can't be because that's the Def of it. What I meant was an over reaching term to cover all these illnesses, with a score. In this case pain score would be 0 or close to it for example.

It was just a thought as it'd just be a way of showing how bad you are at that time afterall a diagnosis of fibromyalgia could be someone who works as normal and isn't hugely affected or someone stuck in a wheelchair.

Anyway perhaps better of in its own thread lol.

Apologies

Anyway Alness, you say you've been diagnosed did they say fibromyalgia? Also what we need to bare in mind is everyone's pain threshold is different what you might think isn't a lot of pain might be awful to someone else it's terribly subjective.

Where do you have pain, the little you do have?

Who have you seen? Duloxetine is used for neuropathic pain as well as an antidepressant so it could be that is masking some pain already so you don't realise how much you could be feeling.

I was initially diagnosed with
Post viral fatigue syndrome
Then cfs
Then ME
Then Fibromyalgia

Sigh

I think sometimes black & white text can come across harsher than people mean to be, without the context that it was written in.

A diagnosis of one of the above doesn't preclude the other especially as none of these are "ilnesses" as such they're more descriptions of symptoms (obviously we are all ill)

Oh dear written war & peace again, apologies hope everyone is well today
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Re: A newbie needing help!

Postby denys » Sat Aug 16, 2014 11:59 am

I agree there is definitely quite a large area of overlap, what I was trying to say was I am very surprised that a diagnosis of FM is being mooted when there is little to no pain, Alness I'm sorry if we made you feel anything other than very welcome. Thing is with FM sometimes you just cant type for long

The fog makes it difficult to say what you mean so sometimes things are just short and sweet. We definitely arent a closed shop so maybe we need to start again

You are very :welcome: and we are glad to have you and hopefully we can offer you greater support than we have shown so far in the future, I dont know of any FM specialists in Scotland, the best place to find out something like that is to maybe google it or ask at your local hospitals rhuematology department. Failing that maybe if you have a local support group in your area, someone there may know
Denys

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Re: A newbie needing help!

Postby Alness » Mon Aug 18, 2014 3:23 pm

Thanks guys and sorry if I overeacted before.

I think I was diagnosed with FM because it clearly wasn't CFS (with me finding physical effort reasonably ok). It's interesting though, that people seem to agree that the pain is the essential symptom. I do have quite a lot of pain Rich, but as someone with a congenital spine issue and having had ops on my knees due to running and football I just tend to think that it's what you would expect in your fifties! Now I'm not sure.

I thought, when I asked the question, that people would say "oh everyone has different symptoms" but people's responses mean that I'm certainly doubting my diagnosis now. But then it's not really a definitive diagnosis is it - more a process of elimination? What's becoming clear (to me anyway) is that I have something which is in this kind of area - a variant I suppose, with some of the symptoms of FM, maybe some of CFS. Whatever it's called, it's in that area. Is this not pretty much the case for everyone though - but with the pain being the most defining symptom in most cases?

Okay, I'm probably rambling now. What I do know is that I'm not very well and a diagnosis is useful as it at least gives you something to fight against.
Cheers,

Alan
Last edited by FluppyPuffy on Mon Aug 18, 2014 3:43 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: A newbie needing help!

Postby denys » Tue Aug 19, 2014 10:22 am

Alness, we are all so very very different and that is what makes this condition so difficult to understand and I suppose treat. There are members on here who work full time, dont take any meds etc. So we were just quoting the 'accepted' criteria, that said we arent experts on anything but our own condition :-D :-D :-D :-D

If you have pain even though you have thought it was from old ops, pre-existing condition, maybe its not :?: :?: :?: :?: If the medical profession has said you have fibro then thats what you have until they (may) change their minds.

Hopefully all will become clear (but I wouldn't hold your breath :lol: :lol: :lol: ) and you can get some relief.

One thing we have all noticed though is that it is really easy to 'grab the wrong end of the stick' with the written word and I'm sorry if we didnt come across as supportive as we should have, just glad to have you on the forum :hugs: :hugs: :hugs:
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