Embarrassment of dealing with extreme... - Fibromyalgia Acti...

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Embarrassment of dealing with extreme pain

ChristCornHell profile image
14 Replies

Or.... Embarrassment 0f being ill

Like most people, sorry it's been a while.

I just had my first pain clinic, and thank FUNK that I got the reassurance that I so badly needed. Someone who actually understands what my pain is and doesn't appear to be scrutinising every word and action so they can use it against me. My medication has been reevaluated and over the next few weeks a few major changes have been suggested and are already taking place. The nice doctor has told me how unlikely I am to be free of this mostly excruciating pain, but how we can try many different ways to help make it more manageable. I had almost given up with "screaming while nobody listened". After 4 years sober I started using codeine which quickly became heroin. It didn't take long to become dependent again and fortunately due to the previous addiction of 20+ years I was quick to nip it in the bud before it ruined my life and made worse the lives of the people who came into contact with me. I feel I don't have to bang my head against a brick wall anymore. I know I'm going to keep coming across these brick walls but I now have help getting over them. Hoping for free gym access soon as this nonsense is over. At 50 years old I would happily take a few pills everyday of my life if it means that I am able to function. It's not only about the drugs but much more about my quality of life. For just one person to understand and believe that I have suffered too much and to have empathy instead of suspicion when I am unable to describe the pain, lis a better tonic than any drug, illegal or prescribed. If it wasn't for people like the pain clinic or all of you fellow sufferors I would have had no reason to carry on with or without the drugs. It's NEVER easy, but thank you all for making it bearable. Thank you all again... Virtual hugs all round OXO

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14 Replies
LoneEra profile image
LoneEra

So glad they’re listening to you. And you should be very proud of yourself for overcoming the heroin addiction - an incredibly hard thing to do.

I would say that if you can do that - twice now - you are totally strong enough to manage the pain. Yes, there will be really rubbish days when you feel like giving up, but there will be “good” days too.

And you will find ways to lessen the pain - even if it never actually goes away.

Wishing you luck with your new meds xx

I did a 6 week pain management course and I found out so much about my medication and naturally controlling the pain! A very informative course, which I'd recommend to anyone suffering from pain. It doesn't stop the pain but teaches you ways to control it. Xx

LoneEra profile image
LoneEra in reply to

Which course was this? Would love to know. I did the NHS one and it was terrible - patronising and pointless. But maybe the tutors weren’t as good as yours! Xx

in reply to LoneEra

This course was for six weeks and was run by the NHS. Actually, one of the doctor's was one of the session personnel. The team was made up of professionals and administrative staff who actually work with people with pain. It was a small class of around 13 of us and we saw some of the doctors when we had hospital appointment. It was called The Pain Management Course. If you go onto the NHS website, you can see what pain management services are available in your are. You just enter your postcode. Let me know how you get on. For now you need to learn to breathe deeply like a sleeping baby, as this puts more oxygen in your bloodstream, relaxing you. Also go onto YouTube and search for meditation music. Check your posture all the time, especially when sitting. A lot of people don't actually relax whilst sitting. You must relax and allow the chair to hold you. Xxx

in reply to LoneEra

pmsltd.co.uk/

Yassytina profile image
YassytinaFMA UK Volunteer

I am glad the pain clinic was helpful and we do need reassurance and feel we are being listened too, that’s so important to us, pain never fully goes away but if we can find ways to lessen this and move forward thats good. Will be nice when you can start the gym, we differently need to get back to normal when people are immunised. Well done for being strong.

in reply to Yassytina

As I have a degenerative spine condition and severe wear and tear of my knees, ankles and wrist as well as fibromyalgia, I can't go to the gym. That's why the pain clinic was helpful. They understood that everyone's condition and pain is very individual. I'd recommend it to anyone. The only issue now is consistency of the services received around the country.

Yassytina profile image
YassytinaFMA UK Volunteer in reply to

Hi there I think my reply should have gone to Christcornhill above ,my right knee has had it now and at the stage I need a replacement but at 59 I am trying to postpone as long as I can , the hospital agreed to try do the excercise s and see how I go on as the chances are I’d need a 2nd before the end of my years. I must admit I cannot do very long walks and if I over due things my knee aches I am glad the pain clinic was helpful, I’ve never been referred to one as yet by my doctor, I live in Suffolk.

ChristCornHell profile image
ChristCornHell in reply to Yassytina

I had my hip replaced 15 years ago and they said that it would last about 10 years. It's still there and still doing a good job (it has been dismissed as a possible reason for the other pains) so I would encourage you to take the knee if the only thing putting you off is trying to put off your following operation. It does make me smile though... The way our minds work at times. Most of the people I know have had something replaced before they turn 60....its still young you know (-,;

Yassytina profile image
YassytinaFMA UK Volunteer

I know I’m 59 and have a special birthday in 6 months 🤣, all the swimming and excercise I did thought might have helped , oh well, I use to swim 3 times a week but now having cfs with fibro i just wanted to sleep the next couple days so had to give it up, my other hobbie is gardening so help needed on that now as well, but i have a greenhouse and just growing some tomatoes, etc raises a smile I’m pretty green fingered can’t wait for Spring 😀🌺🌸

I hope it all helps for you all, I don't really know anything about this but my mum goes through the same pain and the doctors won't help her she can hardly stand on her feet without her body hurting and she doesn't like us helping her and it's hard for me seeing her go through it i would do anything for her but i'm worried and don't know what to do.

ChristCornHell profile image
ChristCornHell in reply to Missunderstoodmum

Love and understanding is often all we want or NEED.?...Accept that pain can sometimes make us snappy....And we all want to prove that we can still be independent, especially when we know we need help

I just checked and the company is called Pain Management Solutions pmsltd.co.uk/

ChristCornHell profile image
ChristCornHell in reply to

Even with the fibro fog I won't forget that PeeingMySelfLaughingToDay. Co. UK. I will look into it now... Thank you so very much

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