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The UKFibromyalgia Forums • View topic - Hello



Hello

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hello

Postby Bluebird » Sat Jan 28, 2012 1:34 pm

Hi,
I don't know as yet if I have FM but I was diagnosed with CFS about 7 yrs ago.
The main problem that has lead to my referral to the Rheumatologist is I had a knee op about 10 yrs ago now and I have found it very difficult to recover from it. Even to this day I get lots of pain in it and it feels numb like at the dentist when the aneasthetic is wearing off following a filling.

About 18mths ago I had an xray which told me I was showing the early signs of arthritis in it, but in the last 12 mths it has felt much worse.
I was recently sent to a specialist who ordered alsorts of blood tests and a nerve conduction test and an MRI scan. The blood work was normal, the nerve conduction test showed all was fine but that I did have a lot of quad wastage and virtually no strength in the bad leg. The MRI scan showed I had further arthritic changes behind my knee cap. The specialist however felt that even with slightly more deterioration and all other knee structures being sound (they thought I may have a bursa or cartilage issues) that I really shouldn't have so much pain. The specialist did say that they know that people with CFS are known to show a heightened pain response which is not in keeping with the injury and she felt that I would be best seeing this other specialist as she felt I may have FM or at least rule it out. I still have a month to my appointment date.


I have looked on your site and I can tell you I have lots of symptoms similar, but then I presented with all but one CFS symptom and still found it very difficult to find someone who would take those symptoms seriously. I realise the 2 conditions can overlap.

At the moment I'm just wondering what they will likely do on my first visit. I was always told by my CFS counseller that they didn't encourage support groups for CFS sufferers as they tended to symptom watch, which I must admit I was very bad at in the early days (but that was mainly because I really thought I had a serious undiagnosed life threatening illness). I have since tried to keep away from the Drs as much as possible but it has been hard.

In general I don't sleep well, I'm putting on weight (may be my age), I feel like my glands in my neck are constantly up, my neck hurts my lower back hurts and is really stiff every morning. I have lots of face ache particulary around my jaw and up to my ear, I did think it was ear ache for a while and it feels numb when its sore. Even to touch its very sore. My knee feels very stiff and makes me limp quite a lot and I get general aches and pains most of the time. I do feel like my body has run a marathon quite a lot and even trying to rest gives no relief. I also get quite a lot of headaches which don't go with paracetamol but I have now put down to increased adrenalin levels.

The only thing I have never suffered is bowel problems but I do get gastritis. Hope I've covered everything. I'm looking forward to getting some answers.
Last edited by shazq on Sat Jan 28, 2012 4:35 pm, edited 1 time in total.
Reason: put into paragraphs to make it easier to read
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Re: Hello

Postby shazq » Sat Jan 28, 2012 4:47 pm

Hi Bluebird

:welcome: to the forum

It very hard for us to say if you have fibro, like you said the symptoms between CFS and fibro can overlap, some doc have problems telling them apart, some docs even say they are the same. :dunno:

Sorry i am not being much help but getting the answers to whether you have fibro on top of your CFS will have to come from either your GP or ask your GP to refer you back to see the Rheumy.

Fibro could be a secondary condition to your arthritis but again you need your Gp to confirm it, hope you get some answer soon. :hugs:
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: Hello

Postby Bluebird » Sat Jan 28, 2012 4:55 pm

Thanks for your reply.

I haven't been to see the Rheumatologist yet, the appointment is for end of Feb, just wondering what they may be likely to do at the appointment.
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Re: Hello

Postby shazq » Sat Jan 28, 2012 5:17 pm

HI
My Rheumy checked me over for arthritis on my first visit and said no i never had that and discharged me but did say he would be happy to see me again if the pain carried on.

6 months later my GP referred me back again, he asked a few questions walked around the back of me and pressed his hands in my shoulder :yikes: i screamed :shock: :lol: :lol: :lol: Oh did that hurt he said :twisted:

Thats when he said you have fibro, he handed me a leaflet and told me to read it and go get my head around it and said he would put me on a living with pain course.

Then he referred me back to my GP.

Some Rheumy will do trigger point tests and send you to physio but most will put you on a med and discharge you back into the care of your GP.
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Re: Hello

Postby Bluebird » Sat Jan 28, 2012 7:04 pm

Thank you again, doesn't seem like thats much support then if you are discharged straight back to GP. :cry:
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Re: Hello

Postby shelleydwales » Sat Jan 28, 2012 7:35 pm

Hi bluebird,are you blue as in the flying bird or as in the footy team???
My rheumy is fantastic,i gave had xrays,mri's,tender point test,ct scan ultrasound scans,blood tests ,very thorough !
It seems to differ quite a bit though,as I have had 4 appointments in the last 6 months and as others have said they are refferd back to gp.
Good luck with yours!
Shell xxx

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Re: Hello

Postby denys » Sat Jan 28, 2012 8:14 pm

hi bluebird and :welcome: to the forum :wave:
Denys

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Re: Hello

Postby FluppyPuffy » Sun Jan 29, 2012 12:29 am

:welcome: to the forum Bluebird :wave: :wave:

Sorry to hear you may have FM to go with CFS, there are several members on here who have both conditions so you may find some of the things on here can help with how you feel etc.

It's not easy to say what you may experience when you have your rheumy appt :facepalm: :facepalm: Sadly approaches, attitudes and procedures vary so much from one specialist to another, it seems more and more like they are making things up as they go along :facepalm: :facepalm: Hopefully tho, you'll have someone understanding and helpful who is prepared to listen to what you have to say, will send you for any tests and things they feel may be of help, and then give you a definite dx, along with info about what is available in your area that could be of help to you, such as physio, hydrotherapy etc. After this, it's not unusual to be discharged back into the care of your GP to start on a suitable treatment plan.

There is a lot of info and advice on here, which you may find helpful. We also try to support each other with what comes along with something like FM.

Anything that you want to know about, just ask and we'll see how we can help you with it :wave: :wave: :wave:


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Re: Hello

Postby Bluebird » Sun Jan 29, 2012 2:48 pm

Hi, thank you everyone for making me feel so welcome.

I have been browsing your forum and its very informative.

In answer to the question about my username bluebird it was just something I plucked out of the air when my other choices were taken. :-D
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Re: Hello

Postby wee_g83 » Sun Jan 29, 2012 8:01 pm

hi bluebird!
im a newbie too so thought i would say hey! i really hope ur rheumy app gives you some answers, i know how frustrating not knowing whats going on can be. there is some great info on here so that might help too, fingers crossed!
big gentle hugs! xx
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