Diagnosed with M.E as well as FMS

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Diagnosed with M.E as well as FMS

Postby Sue1968 » Sat Nov 09, 2013 11:29 pm

Hi everyone

I have been diagnosed with ME as well as fms my pain clinic consultant explained that I had both, they also said that I have had fms an awfully long time, 10 + years!

Very depressed about this diagnosis

Any help gratefully received

Sue1968
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Re: Diagnosed with M.E as well as FMS

Postby FluppyPuffy » Sat Nov 09, 2013 11:55 pm

I've moved you into here Sue with you posting about another condition. There are a few of us on here with both FM and CFS/ME, and it is quite often an associated condition of FM.

I was finding it difficult to adjust to having it added to my list of pawlynesses when I was initially dx'd. What did help me was being referred to my area's CFS/ME Service/Clinic. Thru them I had a number of 1~to~1 sessions where I learnt more about the condition, how it affects me personally, how better to pace myself to allow for/include fatigue when doing things, how to deal more effectively with the thoughts, feeling etc that it stirred up, how to keep myself active and grade my exercise and a whole host of other little things that have become pretty much part of every day for me now. I could have attended a number of group sessions, but due to the venue and getting there each week (my OH also doubles as chauffeur on his off~duty days from work :f1-car: ) the 1~to~1s were the best option.

It might be worth asking your GP about the availability of a similar service/clinic in your area and see what they may be able to offer you in the way of help.
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Re: Diagnosed with M.E as well as FMS

Postby denys » Sun Nov 10, 2013 2:38 pm

Hi Sue, sorry to hear you are having trouble after having being given a second label, lots of members seem to have both and it is a double whammy and I hope following Flups advice you get some understanding and acceptance :-D :-D :-D
Denys

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Re: Diagnosed with M.E as well as FMS

Postby nannyogg » Fri Nov 15, 2013 8:37 pm

Hi Sue, me too.
Hope you're doing ok :)
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Re: Diagnosed with M.E as well as FMS

Postby becbob » Sat Nov 16, 2013 12:44 am

Hi all, I too think I have both but Dr hasn't said anything about CFS, we mainly concentrate on the pain side of things. I am going to see her on Monday and I will mention it. I am so tired all the time and I get worse as the day goes on. I also feel as if I'm walking through thick air and I feel really heavy and have barely any energy. Last week my throat started to become sore so I thought I was coming down with something as my glands were up too but it hasn't progressed into anything. I have a very croaky throat and it isn't too painful but today I have found a lump in the right side of my throat that hurts if I press it. It's about the size of a marble. After reading this post I looked up the symptoms of CFS and I seem to fit. I know I also have FM as I fit in there nicely too.
I just wondered when you all knew that you had both? Which one were you diagnosed with first and how long did it take for you to be diagnosed with one and then the other?
Hope everyone is a well as they can be.
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Re: Diagnosed with M.E as well as FMS

Postby *Lisa* » Sat Nov 16, 2013 2:39 pm

becbob wrote:I just wondered when you all knew that you had both? Which one were you diagnosed with first and how long did it take for you to be diagnosed with one and then the other?
Hope everyone is a well as they can be.


With CFS i get a huge mental fog that appears and so my speach slurrs and i cannot cncentrate/think and i need to go straight to my bed to sleep. I also come over very weak and faint like every ounce of energy has been drained from me.

FM fatigue is more of a muscle fatigue for me when my body just dont wanna move and it feels like im dragging concrete slabbs around with me... lots of effort to do anything! :sleep:

The rhuematologist seemed to think the pins and needles i have is associated with CFS

People with CFS tend be be more prone to catching viruses/colds and infections which seem to take much longer to shift then the average person.

I was diagnosed with FM first the CFS a few years after. I tend to think in my case the body was completely drained with pain and the battle to get through each day mentaly and physicaly which brought on CFS

Feeling like you have the flu/coming down with something is another classic symptom.
As a Public Moderator & Admin 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...Lisa
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Re: Diagnosed with M.E as well as FMS

Postby Sue1968 » Thu Dec 05, 2013 11:52 pm

Hi everyone

I'm doing ok? I'm on more new tablets, this time for rest leg syndrome, I must say my fatigue is in my legs and I've also been told I need surgery to release my Achilles' tendons but my doctor disagrees. I'm finding that RLS during the day is improving after taking the new tablets at night. My dr still is convinced I've got CFS but he's just hoping that these will help to ease the fatigue.

Thank you all once again

Sue
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Re: Diagnosed with M.E as well as FMS

Postby Sue1968 » Thu Dec 05, 2013 11:53 pm

My apologies for duplicating the post there was a problem when I tried to post
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Re: Diagnosed with M.E as well as FMS

Postby FluppyPuffy » Fri Dec 06, 2013 12:33 pm

Sue1968 wrote:My apologies for duplicating the post there was a problem when I tried to post

I've removed the duplicated post Sue. Looks like the Gremlins decided to mess with things when you were clicking on the "Submit" button to see how many times they could get it to appear on the board :mrgreen: :mrgreen: :mrgreen: :mrgreen:
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Re: Diagnosed with M.E as well as FMS

Postby karenc » Sun Jan 19, 2014 12:43 am

Hi,
I too have both. I was diagnosed with FM then about two years later ME as well. I attended a group course and that really has helped.
Karen x
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