New member Newly diagnosed uk

[Wivenswold]

Told him I didn't want sympathy.

Spot on. I told my family and friends that I don't want "sympathy", I want "understanding". One way where Fibro gets easier is once those around you understand it and can make adjustments in their behaviour to help you.

Never forget that Fibromyalgia isn't you, it's your unwanted companion. Distancing it from "me" makes it easier when it causes chaos and/or disappointment.

 

[sunkacola]

Never forget that Fibromyalgia isn't you, it's your unwanted companion. Distancing it from "me" makes it easier when it causes chaos and/or disappointment.

Only caveat about this is that if you truly distance it from what you call "me", then it can become something you are fighting against, and that is seriously unhelpful. My thought is that it is you in that it is something in your body and your body is not separable from your mind. It is all "you".

There is definite value, however, in making sure you do not identify as a PersonWithFibro, or allow that one thing to define you in a major way. That also will lead down a negative path.

As with everything else in life and especially with fibro, balance is required for optimal health.

What works for me is thinking of it this way: I am a person who has fibro. I am a person who has chronic depression and pain. Etc. That way the phrase "I am a person" comes first. I am not the pain, I am not the depression or the fibro, nor do those things have me. This allows it to be perceived by myself and by others as only a part of me, like having a certain eye color, or being tall or short or whatever gender. Definitely there, not something that can be separated from self but at the same time is not by any means all of or a definition of who a person is.

 

[xxcazzyxx]

Only caveat about this is that if you truly distance it from what you call "me", then it can become something you are fighting against, and that is seriously unhelpful. My thought is that it is you in that it is something in your body and your body is not separable from your mind. It is all "you".

There is definite value, however, in making sure you do not identify as a PersonWithFibro, or allow that one thing to define you in a major way. That also will lead down a negative path.

As with everything else in life and especially with fibro, balance is required for optimal health.

What works for me is thinking of it this way: I am a person who has fibro. I am a person who has chronic depression and pain. Etc. That way the phrase "I am a person" comes first. I am not the pain, I am not the depression or the fibro, nor do those things have me. This allows it to be perceived by myself and by others as only a part of me, like having a certain eye color, or being tall or short or whatever gender. Definitely there, not something that can be separated from self but at the same time is not by any means all of or a definition of who a person is.

Wise words my daughter has autism, they told me she wouldn't amount to much when she was 5 years old. I've always told her dont let this define who you are. She went through uni and holds a full time job, shes now 26 and I'm glad I didn't listen to the experts

 

[Nickimclean]

Hi that was a pretty quick diagnosis I’ve been in constant pain for over 2 years which comes in bad flare ups like my thighs hips buttocks are on fire and like being stung , deep aching, deep aching in shoulders, neck , top of arms occasionally hands , super stiff hip adductors, spasms in my sleep and chronic restless legs and fatigue, same as you I was a keen mountain bike rider and exercised regular, I can’t ride more than few miles now without being wiped out . I’ve had neurologist with lumber mri , cervical spine , and brain mri , only findings were cervical spondylitis and narrowings on c4-c6 . I’ve had hip x rays because my physio was sure I had arthritis but same was clear , had all bloods done and clear . His diagnosis says likely FND pending rheumatologist fibromyalgia diagnosis, so far this has took me 2 years and now they saying another 10 months to see rheumatologist, so frustrating. I’m glad they got to root of your diagnosis quickly

 

[JamieMarc]

Keep on swimming, @Nickimclean . I know it's frustrating but you're getting closer. It took me 7 years to get a diagnosis, so I do feel your pain.

 

[JayCS]

another 10 months to see rheumatologist.

Hi Nick and welcome!
Is that UK/NHS?
I found a few workarounds whilst waiting 6 months:
One was via a trick, but essentially would have been the same just phoning around all the rheums in the big towns near us. That was when I could still do 2 hour train trips without making things too much worse than they were anyway.... That first rheum didn't diagnose fibro and sent me off.
Then getting all other things checked too, in my case especially 1-2 orthopedists, endocrinologist, psychiatrist and sleep lab psychiatrist, which knocked lots of other things off the list, diagnosis and also treatment-wise whilst giving a few small ideas.
All before the 2nd rheum - who then had an easier job concluding it's fibro than the first.
And treatments would be the 3rd area of workaround: Working on each symptom singly - symptom tracking, trigger hunting and starting trialling every one of 100s of treatment forms. This was all just hampered by placing too much focus on what docs could do. As soon as I was on my own, I could concentrate more on what I knew would be good for me instead of what they thought.

 

[Auriel]

Hi cazzy, welcome ️ the person you you spoke about (whoever they are) doesn't sound very nice at all! ( i try and avoid people like that now) I honestly can't say what is going to happen with your health (I've had mine over 15 years) but mine has fluctuated to a bit better bit worse days (I like my gabbapentin for the same reason you like amytriptaline) I wish our town (or nearer town or city's) had a fibro clinic that would be cool (uk based too) I get migraines nearly (and sometimes) every day so can sympathise what thats like (my mri came back normal with that too) you don't need to fake smile for anyone! (I used to do it all the time but I stopped now) your feelings are your feelings, your pain is your pain if you've got people around you that care about you (which you have) it's a huge thing, I used to be super active too (I try not to think about the past now) I just focus on the now, , being honest with myself and trying to make my life best I can (for me, and those around me) if you want you can post or pm us any time (it's what the forum was made for) good luck with everything

 

[xxcazzyxx]

Thank you @Auriel for such a lovely welcome. gentle hugs to you I've been reading lots all around this site. It's very informative, and so very helpful. Glad I joined

 

[mrsb62]

If you want to vent you vent hun.
My workplace haven't been that understanding so you have a great boss there hun even though I'm stuck at home due to my mobility being really bad I still get messages saying u r faking this get back to work now I've invited everyone round to come and look at how I am just to show them I'm not faking I know its hard hun but u have got this people still don't understand fibro unfortunately. And it's different for everyone. I've been told you have great days and great weeks but then u have the consequences of having them good days. If you ever need a chat I'm always here message anytime. People need to be more sensitive to a situation you have got this and u r amazing xxx

 

[Auriel]

@mrsb62 , when i read your post on what is being said to you i was honestly disgusted, accusing you of faking is just a form of bullying (and bullying imo is just a watered down term for abuse and that's NOT ok) one of my jobs once was looking after the elderly and our matron would swoop into each room I was in watching me like a hawk (stressing me out) and when I'd make mistakes (due to being nervous of her) she'd scream at me in front of my work colleagues (creating a vicious cycle) she also had me on the floor wiping wheelchairs when my 11 hour shift had finished (this wasn't even part of my job criteria!, she wasn't even my boss!) I'd no idea at the time this was workplace bullying (I wish I'd known my rights) you have rights too!!!