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The UKFibromyalgia Forums • View topic - Refferal to CFS & Chronic Pain Clinic . . . . .



Refferal to CFS & Chronic Pain Clinic . . . . .

Anything to do with the NHS or Private Healthcare.

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Refferal to CFS & Chronic Pain Clinic . . . . .

Postby vicky_nunn » Fri Aug 05, 2011 5:30 pm

Hi All

Anyone been to a CFS & Chronic pain clinic? Im feeling a little confused coz although i was diagnosed almost 10 yrs ago with cfs i have recently been diagnosed with fibro. It is my rheumy that reffered me. . .

The letter i got through says:
"The aim of this group session is to provide you with some information about the self management approach to CFS"

On the website it says it has physiotherapists, occupational therapists,clinical phsicologists and admin staff (well of course they do!)

I just am worried they wont give me help with medication. . . Im worried they wont be interested in medication at all. and anyway, this first appointment seems to be a 'group' session, like group therapy it sounds like!!

anyone, any experiences???
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby sjc » Sat Aug 06, 2011 2:50 pm

Hi there, I do not know much about CFS team yet, as I trying to get referred myself.....but I think it very similiar to a pain clinic where one sees a range of specialist including OT, psychologists, pyshiotherapists, etc.....I don't think pain clinic and CFS team's are that different, to be honest......I know that in some cases, CFS team will see those with severe CFS/ME in their homes, well I know that my hospital does anyway....

Take care and hope this helps.....from SJC :wine:
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby denys » Sun Aug 07, 2011 11:21 pm

Dont know sorry I have never been to one, am hoping to get a referral though :fingerscrossed: :fingerscrossed: it works for you :hugs:
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby m2kl » Thu Aug 11, 2011 7:42 pm

I am due to be going to both and whilst i am looking forward to the pain management course i am dreading the cfs group sessions. Reasons being is that cfs is 'faked' by many and im not sure i can have patience for that and from looking at research and others experiences they focus a great deal on CBT(cognitive behavoural therapy) and GET(graded exercise therapy) which i wont try for a second so they wont like me.
However the pain course will be focused on getting the right medications, aids at home, physio, alternative therapies and possibly gentle exercises(not GET more physio ones).
I say go with an open mind and see what happens. Even if you gain one thing it will be worth it xxxx
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby FluppyPuffy » Thu Aug 11, 2011 7:50 pm



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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby m2kl » Thu Aug 11, 2011 9:03 pm

Sorry i didnt make myself clear enough...CBT i think is a fba idea and will try that. Its the GET that i wont try. Reasons are people with CFS dont respond well to exercise and to push and push yourself can have a detrimental effect on yourself. I say go with an open mind because, as i said, even if you gain just one thing from the course it will be worth it. I will be going with an open mind to both courses and am very open to suggestions, apart from GET.

Sorry i shouldve made myself clearer. I knew what i meant though!!! :crazy: :crazy:
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby FluppyPuffy » Thu Aug 11, 2011 9:38 pm

Don't worry about it, i read it as meaning both instead of the GET one. I know that exercise can further aggravate CFS. I would have thought that it is a CFS and chronic pain clinic that they would be aware of how things can impact and aggravate things, and tailor the program accordingly :dunno: :dunno: :? :?

I wholeheartedly agree with you about the open mind and even if one thing helps, then it is well worth it. Hope when you go for your appt with them there are some things that help you :fingerscrossed: :fingerscrossed: Try not to worry about the CFS group sessions, most people will be dreading that part and probably feeling just like you do. There could be some helpful things that come from it, as well as the chance to meet fellow CFS-ers. You could even come away from it with some additional friends from it :fingerscrossed: :fingerscrossed:


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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby vicky_nunn » Fri Aug 12, 2011 2:16 pm

Hey all. .

Thanks for the responses. :wink:

Well i went yesterday, the 11th. This was a group session with 3 therapist (OT,Physiotherapist,psychotherapist) to discuss what the clinic can offer.

Firstly, the session was supposed to be at least one hour, we started 10-15 mins late (coz some were late, which i didnt mind), it was wrapped up so quick i could hardly believe it! They were a v nice bunch, briefly introduced themselves then gave us a couple post-its if we had any questions we wanted answered and put it on a board and they answered it through the meeting. Secondly, it finished at 2.20! It felt a bit of waist of time. No one really talked much as in the patients... but then neither did i so i understand!

They dont deal with medications and i dont see how its a chronic pain clinic as they didtn mention that at all, maybe thats a different aspect of the dept. I just felt kind of cheated (dont know if thats the right word) coz my rheumy told me it was "a fibromyalgia clinic".

Although the information they gave on 'CFS' mentioned symptoms that sounded like what you get with fibro it kind of doesnt seem to give much to fibro. . . they did say tho they have seen patients with CFS & Fibro & just fibro.

The next part is to let them know it you want an assesment personal to you, so you still dont even have to say im def going ahead with this to get the next appointment. You discuss what you want and what they can offer to you, which, seemed to be suggested that it was varried according to each patient, and it they felt they could not help you at this time they would say.

They said if you dont feel ready for a 'Self-help' programme then thats fine too. To be honest i dont know if i am. . .

Im not totally disabled by fibro, at this recent time im feeling quite depressed and having some problems with anxiety. Dr has said she thinks i need councelling, which im looking into but i want to see someone i know and have had councelling from before because they know me and my complexitys.

I am taking amiytriptolin at night which is helping with sleep but i am feeling like i need a little extra help for anxiety!

I suppose i could go to the personel assessment and see what happens that day . . . .but i still dont know what to do..
:banghead:





xxxxx
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby *Lisa* » Fri Aug 12, 2011 9:19 pm

These sorts of clinics are supposed to help you with coping techniques and how to pace yourself etc...

Some people will not benefit these groups for there own personal reasons and i wouldnt either from the stage im at now and if it was offered now to me

we are all different and we all responed differently to methods of pain relief whether it being medications/therapies or both.

I think they like to get newly diagnosed patients or people who have only had FM a little while to these sessions to give them a head start in how to cope with chronic pain and fatigue.

When i was diagnosed i was given just a leaflet and a :wave: if i have had the opertunity to go to a clinic i personaly feel i wouldnt be as bad as i am today in many ways...

Its good to see these clinics are offered and i would see how this can benefit you and if not go about help in your own way like as you said as i did that, you get to know what you need and then you go about that.

I am also an anxiety sufferer and i had CBT which i found really great especially learning techniques as it helps me cope now and prevent many flares.

good luck in what u chose to do :goodluck1:
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby FluppyPuffy » Fri Aug 12, 2011 9:25 pm

You've nothing to lose, apart from a bit of time, if you go to the personal assessment vicky. You never know, you could be surprised at what could be suggested for you :fingerscrossed: :fingerscrossed:

I try to approach all things with an open mind, and prepared to give whatever is suggested a good try as you never know, there could be something in it that makes a real difference to you :fingerscrossed: :fingerscrossed:


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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby denys » Fri Aug 12, 2011 10:37 pm

I agree give it a go and if its not for you all you've lost is a little time but you may gain something :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Refferal to CFS & Chronic Pain Clinic . . . . .

Postby vicky_nunn » Sun Aug 14, 2011 1:27 pm

Thanks guys!

I think i will go to the assesment just to see what they suggest. . .

I have had CFS for about 10 yrs but my mum always said it seemed more like fm (she has fm) so i probably have had it for most of that time!

Thanks for your help and views.

xxx
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