DIFFERENCES BETWEEN CFS/ME/FIBRO

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DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby shazq » Fri Feb 25, 2011 1:48 pm

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby FluppyPuffy » Fri Feb 25, 2011 1:57 pm

That's a useful linky shaz, nice and clearly written :clap: :clap:
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby Joolz1968 » Tue May 31, 2011 10:15 am

Thank you so much for posting this link. I have had Fibromyalgia for seven years .. I was diagnnosed after a domestic violence attack had occurred. I have since got out from this relationship and although I am left with this disability I am grateful to be alive [ although sometimes when pain is really bad I wish I wasn't ] . I have recently been diagnosed with Chronic Fatigue Syndrome due to feeling absolutely exhusted and being breathless . However these are not my only symtoms . My main problem seems to be face pain , neck pain and throat clicking . I had a thyroid test which came back as normal [ although in the past I have been borderline ] . I am rather confused though because I can spend months in bed with pain and then it can go away ... so is this Fibro / CFS ? I always thought that the pain with Fibro / CFS was constant , where as I tend to get attacks. I spent eight months in bed last year , didn't bother informing doctor as really there is nothing they can do . Have recently started a new relationship with someone but he dosn't really understand the illness and keeps telling me to go to docs thinking that there is a cure for my ailments but I have lost faith . I have tried to claim DLA many times only to be refused again and again . Your link has helped me to understand the difference bewteen Fibro and CFS , although to be honest when the doc said I had CFS I just said oh well nothing you can do for that either . Again many thanks :)
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby princess » Mon Sep 05, 2011 7:44 pm

I have ME/Myalgia/Sciatica/heart problem
But to be honest the ME/fibro i cannot tell the difference now ive had this since 95.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby nutty1 » Wed Sep 07, 2011 10:10 pm

when i asked about being diagnosed m.e in 80s and now being told its fm in 2000 its linked :dunno:
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby S-E » Sun Aug 05, 2012 12:43 pm

Subject: DIFFERENCES BETWEEN CFS/ME/FIBRO

Joolz1968 wrote:Thank you so much for posting this link. I have had Fibromyalgia for seven years .. I was diagnnosed after a domestic violence attack had occurred. I have since got out from this relationship and although I am left with this disability I am grateful to be alive [ although sometimes when pain is really bad I wish I wasn't ] . I have recently been diagnosed with Chronic Fatigue Syndrome due to feeling absolutely exhusted and being breathless . However these are not my only symtoms . My main problem seems to be face pain , neck pain and throat clicking . I had a thyroid test which came back as normal [ although in the past I have been borderline ] . I am rather confused though because I can spend months in bed with pain and then it can go away ... so is this Fibro / CFS ? I always thought that the pain with Fibro / CFS was constant , where as I tend to get attacks. I spent eight months in bed last year , didn't bother informing doctor as really there is nothing they can do . Have recently started a new relationship with someone but he dosn't really understand the illness and keeps telling me to go to docs thinking that there is a cure for my ailments but I have lost faith . I have tried to claim DLA many times only to be refused again and again . Your link has helped me to understand the difference bewteen Fibro and CFS , although to be honest when the doc said I had CFS I just said oh well nothing you can do for that either . Again many thanks :)


Joolz, I did't know if you were still on the site so I'm PMing because you might get a notification that way.

Your face, neck and shoulder flare ups sound like the could be Myofascial Pain Syndrome. I have that as well as Fibro/CFS. You can get booms and bust cycles with them. When I first got ill my symptoms would fluctuate the way you describe until I got my sleep under control and learned to pace myself. Te Myofascial pain syndrome still has weird flare ups.

With Myofascial pain syndrom (MPS) you have trigger points where the tissue around the muscle tenses up. If it's bad enough a skilled doctor should be able to find them and feel a lump. I have a few trigger points dotted about my trapezias muscle and the ones on my shoulders give me the sort of pain you're describing.

Get an appointment at a pain clinic and ask to be examined. I get trigger point injections at my pain clinic every other month. The pain specialist can feel where my trigger points are and every other appointment I get a full examination that includes a sonogram on my back to find the worst effected areas.

The injection is lignocaine so it temporarily anethsatizes the tiny little area that is the source of widespread pain for me. I had CFS for 15 years before a specialist diagnosed me with MPS and it's been a life changer. My posture is astonishing as I've been hunched over like an old woman for so long.

GP's don't really know what they're doing with this sort of thing. You may not have MPS but you should ask for an appointment at your local pain clinic anyway as they are there for people like us. Go to a sleep clinic too if you're having trouble sleeping.

With Fibro we get something called alpha wave intrusion. A normal person goes through four stages of sleep on a loop, two light and two deep. With fibro the first stage keeps interrupting the deep stages. It's the equivalent of getting poked every time you get into deep sleep and it's why a lot of us never feel like we've slept, because we haven't really. There have been studies where they have subjected people to little shocks every time they got into stage four sleep and the subjects quickly develop widespread pain that is similar to fibro.

I hope you get this and it helps.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby sweetie pie » Thu Mar 28, 2013 6:09 pm

Happy that you left that so called man jools,its a pity this other one doesnt understand tho,i had to leave my last partner due to that to,he had a big health prob so i was always there for him but when i got dianosed with fibro in 2011 he couldnt give a dam about it,but the good thing is i finished it last year,i have alot of that facial pain to,i hate that clicking sound we hear,its a shame you cant get dla can you not try again and get help from someone in citizen advice,hope everythings fine with your partner now and he*s understanding more of your illness,best wishes xox
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby beth.williams3 » Wed Apr 24, 2013 3:10 pm

I have both CFS and Fibro. Last visit to see my consultant I was told that clinically the Rheumatologists are begining to realise that the two and different ends of the same problem. Some people mainly have the fibro end; whilst others the CFS end. But then there are the awkward patients like myself whose symptoms vary daily between the two ends of the spectrum of this illness! :lol:

You can imagine you have lots of chores to do and you awaken in too much pain to do anything so you decide to postpone most of the work until the next day on the basis you will be in less pain then. However, the following day you ignore the alarm clock (if bothering to use it) or do what i do and turn it off without waking! When you eventually awaken; most probably due to urge for toilet and a drink; you are so tired still that you cannot stay awake and sleep the rest of the day away. :sleep: The day after you could wake up tired and in pain.

So totally random as to how the illnesses will manifest and why the doctors are now seeing the two illness as one with two extreme ends. Personally I think that this makes a lot of sense especially when the causal link for them is still unknown but has a lot of suggested triggers.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby sweetie pie » Thu Apr 25, 2013 8:45 pm

Gosh fibro is enough to deal with due to the multi amount of symptoms, agree with you, re the sleep as you just need a drink or the toilet, I could stay in bed all day if I could but they say that's the worst thing to do, yes you wake up to it every single day, never a break from it,& doing a wee task you get so out of breath, a horrible illness this XX
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby TASCFS » Sat May 11, 2013 4:36 pm

Oh the confusion!
I've been unwell since I was a baby, screaming in pain continuously. By the time I was 7 I was in isolation in GOSH with 80% skin loss and total hair loss - they diagnosed me with Total Allergy Syndrome. I have since also been diagnosed with Chronic Fatigue among a few other things, however these are all so linked together - I have long term Eosinophilia which proves the allergic response issues are not psychological as so many so called 'experts' would like to say.
A week ago I got a DLA decision back removing my High Rate Mobility & Care and only awarding Low Rate Care (I'd had them since I was 7, I'm now in my 30's). They claim that I do not suffer with dizzy spells, have trouble being out alone and do not need assistance. I suffer serious allergic responses that cause chronic breathing problems, my carer carries a portable nebuliser and medicates me in these circumstances. I am then usually so dizzy, weak and fatigued that I would be unable to safely get myself home. This is just one of the many complications caused by my conditions.
The reason I've joined the Fibro Forum is that in the decision they have said I have fibromyalgia, well that was news to me! On doing research I can see how they have confused the matter since it all seems to be the same issue. It's invisible illness and the lists of symptoms are all a mishmash of the same things, just in varying degrees.
I don't know where to turn at the moment, my parents want me to move back home with my children so they can support me while my partner goes back to work. He owns a small business but it's not enough to support us and he's now lost carers allowance etc. I can't believe this government can wreck up so many lives in one fell swoop. We will have to move hundreds of miles, I will lose what independence I do have and my children will have to help with some of my care needs rather than the other way around. Since the decision has arrived I have been so stressed that I've been unable to leave the house, missing medical appointments and being unable to start CBT for the panic attacks I suffer from - another thing they claim I do not suffer with due to the ATOS assessor, I wasn't aware that life had to be one long panic attack in order to fulfil the criteria for that to be believable!! He spent an hour in my bedroom with me hardly able to move and thinks he understands my difficulties enough to write a report.
I think I should stop ranting now! I'm sorry, I actually only wanted to ask if there was any point discussing the Fibro/Chronic Fatigue link with my GP but to be honest I'm guessing it's all pointless anyway.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby Iceskatemum » Sat May 11, 2013 9:49 pm

HI Tascfs, haven't seen you on before so if I've missed you Hi and welcome.

You have been through the mill health wise , not much of a childhood for you I'm sure and so sorry to hear of the recent "review" of you DLA . I do sometime dispar of the decisions that these people make. I alway thought that part of the hypocratect oath that every doctor takes was "physician do no harm" how these ATOS folk can live with themselves after some of the decision is amazing.

Please feel free to rant as that's what this forum is good for , we all need a "private " space to let out our feeling as friends & family soon tire of hearing the same old song.

I woud try and appeal your recent DLA decision as soon as possible , I know its a lot of hassle and upset but you need the support so you should get the benefit you are entitled to.

Personally I have found the guides on the Benefit & Work webpage very good for filling out forms and I know other have found thier appeal guides very good as well . It run by a coupl eof barristers and so they are alway on teh ball to give you the most up to teh minute guidance. There is a small yearly charge for membership usually £19 but sometimes on offer for £15 or if a member of a FM local group you can might be able to access for free if they have joined .

Good luck with everything and sorry again about your predicament.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby Knackered » Thu Jul 05, 2018 7:57 pm

nutty1 wrote:when i asked about being diagnosed m.e in 80s and now being told its fm in 2000 its linked :dunno:


Oh yes, you see *it's all in your head according to some doctors*,,, in fact anything that they can't find pathology for is in your mind, because they are very inteligent people,,, Doctors.
They are so clever they quietly burry their mistakes on a daily basis and they are rarely suspected of and much less charged with murder,,,,, Michael Jacksons Dr being one of the notable exceptions, but that was involuntary manslaughter,, a more dignified offence. :sleep:
Intrestingly MS was a phyiatric condition for a very long time,, they even locked you up for it. :roll:
Thing is if it is in your head it negates any responsibility or even intrest in looking for pathology,, one is effectivley dismissed to a greater of lesser extent under the implication of a label.
I highly recomend the book:Skewed:
Psychiatric Hegemony and the Manufacture of Mental Ilness

http://www.slingshotpublications.com/martin-j-walker

It can usually be picked it up used on those well known auction sites for a few pounds.
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