Chronic Fatigue Service

[ChrisinNam]

I had a call from the Chronic Fatigue service yesterday, making an appointment for a phone assessment today. Forty-eight minutes of questions, and he eventually came to the conclusion that I don't have Chronic Fatigue, I have Polymyalgia. Well, I could have told the GPs that and saved the NHS some money, but we had a bit of chat at the same time, so that was good. He says he will write to the GPs telling them of his findings. What a very clever man!

[SheffieldJane]

Oh dear! So you are the wrong kind of tired. 🥱

[ChrisinNam in reply to SheffieldJane]

🤦‍♀️🤣

[Nextoneplease]

Oh dear! Well, I’m glad he was nice, but what a waste of everyone’s time!

Hope you’re feeling a bit better than you were a few weeks ago? 😊x

[ChrisinNam in reply to Nextoneplease]

Sorry! Not really. But I wanted to remind you, with all your stress, that you can only do what you can do, and with PMR that's nowhere near as much as you used to do.

[Nextoneplease in reply to ChrisinNam]

Thank you 😊 I think I’m getting close to accepting that. It’s hard though… as you know only too well xx

[Longtimer]

You couldn't make it up!.....

[ChrisinNam in reply to Longtimer]

Well, it gives us all a bit of a laugh!!

[Longtimer in reply to ChrisinNam]

Certainly has, we all need it...

[PMRpro Ambassador]

Did your GP not understand that almost ALL autoimmune disease can manifest with what resembles CFS? The difference it that CFS tends not to match any other set of symptoms ...

[ChrisinNam in reply to PMRpro]

Not quite sure what my GPs understand. Probably not very much about PMR.

[TheMoaningViolet]

🤣

[Abbey17]

😂at least you know now 😁

[PuttyPenguin]

Well at least you have a diagnosis! Once on steroids things can get better pain-wise. I always suggest to newbies that they read Kate Gilbert's book on PMR & GCA as it will answer some of the questions that are undoubtedly spinning around in your mind. Also there are some amazing people on this site who will give you some very sound advice. Sorry you've had to join this group but welcome!

[seamaid in reply to PuttyPenguin]

Hi . I will second that book I found it invaluable ,and also bought a copy for my daughter,often it is so hard to try to ,describe PMR to our family " you look so well Mum " !!

[PuttyPenguin in reply to seamaid]

Yeah, we've all heard 'but you look so well!' My husband also read it and was grateful that he did as he not only understood what I was going through but, strangely enough, he became far more sympathetic towards his daughter who has fibromyalgia!

[Benos123]

Are not all men clever (in their own little ways???

However don't worry about his rejection, because if you are not strictly Chronic Fatigue Syndrome (CFS) you might fall into one of these other sub-set identifiers namely Chronic Fatigue Immune Dysfunction syndrome (CFIDS), Systemic Exertion Intolerance Disease (SEID), and Post-Viral Fatigue Syndrome (PVFS).

[AliDeJ]

Sorry you are so tired. People don't understand how tired, do they. I like the sound of " Chronic Fatigue Service". My second child was a dreadful non-sleeper. For every pound he gained I lost one through sheer exhaustion. This went on for 8 months. I dreamt of men in white coats taking me away to a dark and silent room where I would be allowed to sleep undisturbed, then fed a good meal, and then sleep again...It's a different sort of tiredness though, isn't it. I would be quite happy staring out of a window all day. It's such an effort to achieve things and I do tend to measure the success of a day by what I have achieved. Silly notion, I know. And sleep does not fix it. Praying that Time will.

[Louisepenygraig in reply to AliDeJ]

Neither of my children were good sleepers. I used to day dream about fainting in the street and being whisked off to hospital under the misapprehension I'd get a good night's sleep! Now I worry about fainting in the street and getting whisked off to hospital when I don't need too! It is a different kind of tired though isn't it

[AliDeJ in reply to Louisepenygraig]

Snap!...the "Chronic Fatigue Service" ambulance would come dashing to collect you. It's the same day dream that must be dreamt by many exhausted people who just want to hand over all responsibilities and be taken care of for a while! Hope you feel more like yourself soon.