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The UKFibromyalgia Forums • View topic - You Learn Something New Everyday



You Learn Something New Everyday

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You Learn Something New Everyday

Postby Queenie_70 » Thu Jul 02, 2015 7:36 am

Hi Everyone,

I was referred and finally seen at the CFC/ME clinic. The lady I saw was amazing, she took the pre-appointment questionnaire and said that she would tally it at another time so she could discuss with me my condition now. Well, at the end of the appointment she stated that I do have CFC/ME, but because I already have a Fibromyalgia diagnosis there was no need to add this to my records as the are the same condition, just different names depending on who diagnosis you. As it was a Rheumatologist that diagnosed me, I get labeled Fibro, but if it was a GP or PT that diagnosed me my label would have been CFC/ME. The treatment is exactly the same. So I am going to a pacing class held for CFC/ME sufferers, but will probably bump into Fibro peeps as well!!!!

Have a pain free day....

xxxx
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Re: You Learn Something New Everyday

Postby SchroedingersCat » Thu Jul 02, 2015 9:07 am

That sounds completely different to what I was told. They are completely separate and different conditions. They are recognised by the NHS and by the Equalities Act as completely different conditions. I have a friend with ME and her problems are completely the other way round to mine.
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Re: You Learn Something New Everyday

Postby Icarus » Thu Jul 02, 2015 11:32 am

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Re: You Learn Something New Everyday

Postby TheHud » Thu Jul 02, 2015 11:37 am

Not to burst your happy bubble Queenie, but they are different diseases and have to be treated differently.

The widespread pain and several other symptoms are different. After watching the 'dabate' in parliament yesterday its obvious that the health department does see them as separate. the problem is that pain clinics etc?? do not have the expertise to deal with Fibro

http://www.nhs.uk/Conditions/Fibromyalg ... nosis.aspx

Without action, which now may be getting off the ground, this is unlikely to change. If Fibro was accepted in this country as it is in others, we would not be having any of the issues with authority and employment that we get.

By shoving it in with CFS and ME it will remain hidden, ignored and under suspicion.

The health guy yesterday stated it comes under musculoskeletal diseases.

https://en.wikipedia.org/wiki/Musculoskeletal_disorder

CFS ME is one disease, probably.

http://www.nhs.uk/conditions/Chronic-fa ... ction.aspx
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Re: You Learn Something New Everyday

Postby FluppyPuffy » Thu Jul 02, 2015 11:59 am

For me as well, they are treated as 2 separate conditions as I have both dx's. The FM dx came first, with the most prominent problem being the pain, followed by the usual tag~along issues. The CFS/ME dx followed a good number of years later as my fatigue levels were now on a par prominence~wise with FM.

FM is dealt with by the Back Care Team and CFS/ME has its own team in my area. Whilst there are a number of cross~over areas covered by both teams, there is a definite distinction between them, with FM treatment focussing on managing and living with the pain side of things, and other delights, whereas the CFS/ME programme has more emphasis on the fatigue. I found that with some areas, such as pacing, I found that I was working at one speed for pain management, and something completely different for fatigue, so when things change for me, I have to redetermine 2 baselines, then work on an average of them for my revised level.

With the 2 teams having different ways of dealing with their respective area's issues, what I work on is a mix of what I have taken from working with each team. Not always perfect, but 15 years in, it has at least got me this far xx


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Re: You Learn Something New Everyday

Postby Icarus » Thu Jul 02, 2015 12:53 pm

I heard from a lecture on fibro that fibro tends to be more pain than fatigue but CFS ME tends to be more fatigue and less pain
Although, obviously symptoms can vary from person to person


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Re: You Learn Something New Everyday

Postby SchroedingersCat » Thu Jul 02, 2015 1:30 pm

That's my understanding too, Icarus
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Re: You Learn Something New Everyday

Postby UnderSiege » Thu Jul 02, 2015 3:06 pm

Hi all.

[quote="Icarus"]I heard from a lecture on fibro that fibro tends to be more pain than fatigue but CFS ME tends to be more fatigue and less pain
Although, obviously symptoms can vary from person to person

Yep that's pretty much my take on it too though I get the idea that Fibro is far more variable.
I get days when the pain is very much a secondary concern (and therefore more bearable and manageable somehow though sheer bloody mindedness and adrenaline counts for a lot) compared to the sheer fatigue. Last weekend, Friday through Sunday for instance I barely lasted half the day before almost falling asleep on my feet...
On the other hand, on Monday I made it through the whole day from 9am through to 4am Tuesday morning but the pain was murderous. Somehow I got to my physio session but couldn't do any exercises.
I can't ever plan anything more than a couple days in advance so no life here :(

The last two days have been great for pain and fatigue. I had to go pick up a shed this morning, loading it on the van and then unloading and getting down the garden back at home. A little tired now but doing ok. This is Fibro for me: good days when I can do things within limits, bad days when I may as well be dead and over all too unreliable for anything regular (hence no job and claiming ESA)

Have a good one!
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Re: You Learn Something New Everyday

Postby Zia2014 » Thu Jul 02, 2015 4:03 pm

I am undecided on this one tbh. I always thought fibro and ME/CFS were different, but the more I read the more I wonder...

I also think Fibro is a 'bucket' for those of us with a lot of unexplaind symptoms ;-)

Like you UnderSiege I vary between pain being the worst thing or fatigue, or as I prefer to call it, exhaustion (because fatigue makes everyone think you're just a little tired :roll: )

Hmmm not sure there will ever be an answer to this one that I'm satisfied with! :mrgreen:
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Re: You Learn Something New Everyday

Postby Queenie_70 » Sun Jul 05, 2015 5:32 am

Thanks for all the input guys. I was only reporting what the lady at the clinic told me. I presumed, due to her training, that she knew what she was talking about. Her technique of teaching pacing is what might help either way. I am still under care for my Fibro, and I am looking into getting involved in the group here. It is a small body of Fibro sufferers that go see a researcher once a month and he follows their journey. How does pain interfere? How does fatigue effect you? What other issues cause distress? Is depression a problem? etc. It might be interesting for me, plus if it helps others in the future with treatment and social assistance, then I am all for it.

I did not mean to offend. I had always believed that the two where different conditions. One fatigue dominant, the other pain dominant. But, having said that, so long as the pacing training she gives me helps, I am at least getting the care I need.

I have to admit, I have yet to watch the debate, (thank you for the links), as focus for more than 10 minutes is not possible. I will be interested to see what is said and how the rest responded.

xxx
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Re: You Learn Something New Everyday

Postby Zia2014 » Mon Jul 06, 2015 2:36 pm

I don't think you offended anyone Queenie. Unfortunately I think there is an awfully long way to go before fibro is truly understood, and even the medical professionals seem to disagree! So a tricky one.

It sounds like that group will be useful whether we agree with what she thinks or not! ;-)
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Re: You Learn Something New Everyday

Postby Zia2014 » Mon Jul 06, 2015 3:38 pm

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Re: You Learn Something New Everyday

Postby bandj » Thu Jul 09, 2015 3:39 pm

I was dx fibro but, as I keep telling gp, consultants, etc, fatigue is my worst problem. I can push through pain (high pain threshold and stubbornness) but I can't push through the fatigue.

I'm currently signed off work and they are considered ill health retirement. If it was not for the fatigue I'd still be working.

I thought the warm weather would ease the pain but it hasn't and I'm suffering due to heart and asthma. On a plus side, my roses look fantastic!!
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Re: You Learn Something New Everyday

Postby FrenchJan » Mon Aug 10, 2015 9:49 am

I hate the confusion over what to call this condition. When I was 40 years old (now 59) I was told I probably had Fibromyalgia. My current Doctor says it is all the same and refers to it as CFS. I recently went to see a Rheumatologist who said I had Fibromyalgia but she was very dismissive, she told me to lose weight and take up Pilates and didn't want to see me again.

Later this week I have my first appointment at the CF Clinic in Leeds. I have completed the questionnaire and virtually all the questions are fatigue related. It does ask about my pain levels but doesn't ask where the pain is. I find the lack of pain questions concerning and just hope this visit isn't a waste of time. I have waited 8 months for this appointment.
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Re: You Learn Something New Everyday

Postby Purpledot » Tue Aug 25, 2015 1:02 pm

I have in the past been diagnosed with ME/CFS and Fibromyalgia.

I was refused an appointment at the local ME/CFS clinic because I also had the Fibro diagnosis. They said that treatments would conflict with each other and they would only treat people who only had ME/CFS. This came directly from a highly-revered ME/CFS and Fibro "expert"!

It's far too confusing for me to even comment!!
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