Howdy!

[User Requested Deletion 36696]

Been looking for a forum to chat/vent on for a few years since i was diagnosed with Central Sensitisation / Fibro.
Hope you're all having a better day than I am.

Hopefully i'll get to vent to you all later!

GG

 

[Jemima]

Thanks for the well-wishes, Grumpy Git You're in the right place!

 

[Flexecif]

Hi there! You are very welcome here. Glad to have you.

 

[humordopey]

Welcome! Happy to see you here and hope to bump with you sometime. See yah!

 

[JayCS]

diagnosed with Central Sensitisation / Fibro.

GG - Were you diagnosed with CSS separately, or was Fibro explained to you (only) as CSS? Do you have anything beyond fibro that the added diagnosis would explain? Or the other way round don't you have any symptoms which don't seem to fit to CSS? E.g. more autoimmune type or hormonal or...?

 

[User Requested Deletion 36696]

Hey. I've only ever seen (in person) a sports specialist & he diagnosed CS. Having been in contact (in person once) with the pain clinic several times now, some of the clinicians used the term Fibro & others didn't, which confused me. I have asked several times & they keep telling me these conditions are much of a muchness & can be grouped together. Whether this is true or not is beyond me.

With the similar symptoms it makes it hard to work out which is closer to what I have / feel, and with the uselessness of the people i'm seeing who refer to this differently, I'm at a loss. It depends on who i talk to about it depends on what get said. Fingers crossed i have an appointment with the pain clinic on 20th Aug.

 

[Jemima]

Fingers crossed i have an appointment with the pain clinic on 20th Aug.

Good luck! I hope it's truly helpful.

 

[JayCS]

Hey. I've only ever seen (in person) a sports specialist & he diagnosed CS. Having been in contact (in person once) with the pain clinic several times now, some of the clinicians used the term Fibro & others didn't, which confused me. I have asked several times & they keep telling me these conditions are much of a muchness & can be grouped together. Whether this is true or not is beyond me.

With the similar symptoms it makes it hard to work out which is closer to what I have / feel, and with the uselessness of the people i'm seeing who refer to this differently, I'm at a loss. It depends on who i talk to about it depends on what get said. Fingers crossed i have an appointment with the pain clinic on 20th Aug.

Well - my take on it is they are all as right and wrong as may/can be...
In the rheum./fibro clinic I was all about them helping me find out if I also had Sjögren's Syndrome: but the prof shrugged his shoulder and said: Doesn't make any difference. Whilst my GP thought Sjögren's is a big thing.
But actually they are more right than wrong. Since not much is known about causes & treatments, each of us needs to address each symptom individually, and look outside of all boxes to find what can help us.
It may be frustrating and we may feel like needing someone to blame, but really it's even ;-) better to use our energy to find our own path.
Modern medicine is used to working exactly the other way round, trying to find a treatment that always works for everyone, and that is tough enough even for clear measurable things like cancer. But we need the opposite...

 

[Jemima]

Since not much is known about causes & treatments, each of us needs to address each symptom individually, and look outside of all boxes to find what can help us

Well said!

 

[JayCS]

Hmm, but not particularly original... Pity, I was hoping the last bit was quite an interesting new way of putting the basic problem..

 

[Jemima]

Modern medicine is used to working exactly the other way round, trying to find a treatment that always works for everyone, and that is tough enough even for clear measurable things like cancer. But we need the opposite...

Never fear, JayCS. That bit was blimmin' marvellous too!