For 2 and half years I’ve been waiting to get in the pain clinic now and they just won’t send me an appointment I’ve seen on my medical records a year ago a few referrals but I’ve never received an appointment - I’ve had every tablet in the country and none is working no more so the last hope is get in the pain clinic and beg for something really strong. My family member has had an appointment in 2 months of waiting but yet I’m 2 and half years waiting?? Is it because I’m not yet 18? I tell you I can’t stick the pain no more I physically getting to the point I can’t walk the bridges of my feet just won’t allow it my knee caps feel like They’ve been beat with a metal pole and my hips feel like they been broken, Yes broken.
I really don’t no what to do no more due to see neurologist Monday. On pregabalin keep having dosage upped but Not working never has.. the pains gone from bad pain to just feeling like every bone in my body is crumbling
I am sorry to hear you are in so much pain. I am also waiting to get an appointment for the pain clinic. Perhaps your GP can follow it up for you? Have you contacted PALS? I found mindfulness for chronic pain helps a little bit.
Thanks for replying. My GP referred me again 2 months ago still no appointment. How long have you been waiting? I’ve honestly tried everything.. painkillers, CBT, counselling FOR PAIN, hydrotherapy, chiropractor, osteopath, physio therapy. Etc nothing seems to work does it I texted PALS last night as I have problems talking on the phone so it’s easier to just text. X
I found the number online rang them and they’ve said that it’s because I was under 18 and I never had a formal diagnosis . Now gotta get appointment to be re refered x
hi iamvvb. I am sorry you are in so much pain. You must go back to your GP and ask why these referrals have not gone forward. I won't be your age but something has gone awry. Don't assume though that the pain clinic is necessarily the place to get strong pain killers. They are more likely to put you on a pain management course to help you manage your own pain as well as assessing your present medication. You may be offered physo as well.
Perhaps you can take someone with you to your GP appointment if you feel you wan't be able to be put your point across properly.
Thanks for replying. I thought that but maybe that pain management course is what I need? My doctor just wants me there so they can prescribe me something that he can’t but he’s a doctor he can prescribe anything he wants? Lol I’ve had all the physio under the sun I’ve had 30 sessions, chiropractor, osteopaths, hydro, counselling, CBT, Hypno. Nothing seems to be working I’ve really tried to help myself ( as we all do ) but it’s coming back worse x
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I’d swap the Chiropracter for Accupuncture. I find it really helps me a lot. Chirp is too painful for me and I suffered badly as a result. That and sports massage. I stopped everything and now I have Accupuncture every week for the pain more than anything! Xx
I found the number online rang them and they’ve said that it’s because I was under 18 and I never had a formal diagnosis . Now gotta get appointment to be re refered x
I am so sorry you are suffering so much. I did go to the pain clinci but my experience was bad - other than the physio people who were lovely and really positive and trying to help - the reception and the nurse was not, however it was benefical for me, as in my case my fibro was at least partly an issue because of my thyriod troubles and doing just the one session a week exercising and moving made a massive difference to how I was feeling - you only get 6 sessions but they clear the path.
I wonder if nothing is working, maybe you need a detox - something I done and had amazing results. If our bodies are so overwhelmed and struggling so much nothing seems to work - thats how it was for me.
I just hope you get your appointment and feel better soon
Thanks for replying. Argh that’s awful did you put a complaint in? What’s the detox all about how do I go about that I’ll try that thank you. If you look above your see what I’ve had treatment wise x
Bless you - they do everything back to front (in my opinion) you need to be referred now, not months down the line. The nurse was completely "fake" didn't care at all, and believe it or not she stopped my pain medication - leaving me with nothing, then one of the receptionists who clearly had no idea whatsoever what Fibro was - I had a massaive flare up (things were really bad back then) on the bank holiday monday and I had a physio session on the Tuesday afternoon about three aclock - I rang the minute they opened on the Tuesday morning to advise I was too ill to attend - did she have a go and me and really spoke down to me (not for the first time) and as I said you get six sessions - I lost the one I was too Ill to attend but I got punished by them deducting another session - I wrote and soon told them, I praised the physio people because they were great but then nurse and receptionist copped it big time, I got a reply very promptly saying they were sorry and that they would send the receptionist on "compassionate training" (something that nurse could have done with) and I was told my pain medication would be reinstated by the nurse - it never was and resulted in an arguement with the doctor, but I had to manage without it.
On a brighter note the dextox was for me a wonderful thing, I was near to being housebound at this point and evening lifting a mug of tea was a challange - I was just so weak - the detox got my strenght back - after doing just one 24 hour detox I would pick up a 12.5kg bag of bird seed from struggling to pick up a mug, I don't really know why it done that but so pleased it did, nothing else was working at the time but things really picked up after that, I really hope it works for you are well xx
I found the number online rang them and they’ve said that it’s because I was under 18 and I never had a formal diagnosis . Now gotta get appointment to be re refered x
Thanks for replying. Yes I’ve told doctors many times last time I went to him 2 months ago I just cried to him I couldn’t take it no more I said I need this referal now and he agreed he’s furious but to be honest I have the worse doc surgery going so there not bothered ur out of sight out of mind lol. I gave PALS a text waiting for the reply now Have u been pain clinic? X
healthunlocked.com/fibromya..., Hello there, I am really sorry to read of this I would ring your doctors surgery and ask for a call back from your GP as this needs to be followed through, if not perhaps a close family member can go with you to surgery and ask to speak to practice manager to make sure your current doctor is aware and follows this through. Sometimes people get missed in the system and always good to ring up and see where you are on the list, I have done this occasionally with referrals and normally they will tell where you are on the waiting list. Tell your GP of the pain you are constantly in and see if they can help you further, perhaps take someone who lives with you to accompany you as a back up, 2 voices to be heard on what you are going through , let us know how you get on it’s horrid for you I’m hoping something is sorted very soon, also a link above if you would like to lock your posts as only our community can see xx
I found the number online rang them and they’ve said that it’s because I was under 18 and I never had a formal diagnosis . Now gotta get appointment to be re refered x
It does sound very odd why your referral hasn't come through yet.
Please don't get your hopes up that pain clinic will give you stronger meds than you have already had.
They look at your condition, life style, age etc before deciding on best course of treatment.
It has been well researched, and proved, that stronger dose of meds do not help pain.
Much of what pain clinic teach you is pain management. That means pacing yourself and managing your pain to a level you can live with. It may involve alternative therapies although these days lack of funding has greatly reduced these.
When an apt does come through...keep a diary for a week or so. Write down what you were doing when pain started. What level of pain you had and hw long it lasted.
I am a huge advocate of pain clinics, the wonderful staff and consultants.
I found the number online rang them and they’ve said that it’s because I was under 18 and I never had a formal diagnosis . Now gotta get appointment to be re refered x
I found the number online rang them and they’ve said that it’s because I was under 18 and I never had a formal diagnosis . Now gotta get appointment to be re refered x
Hi
It's disgusting how you've been treated. I went to pain clinic, they were no good. I've now been referred to have pain killing injection
Try this course of action - always works for me. Write to your GP asking them to chase the referral/make a new one. Follow it up a week later with a telephone consult. Believe me once they have it in writing they act. If you don't get a response copy the letter to your MP/local councillor and let your GP know you are doing it. Good luck
Hi Unfortunately the pain clinic i attended only was concerned with getting people off medication that they'd become 'addicted 'to. It was just about learning to manage your pain & coping with as little medication as possible. I was offered hydrotherapy,counselling, exercise plans etc . Nobody considered upping my meds rather the opposite
I experienced fairly generalized pain for months years ago to the point I was unable to sleep during the nights. I went on a low oxalate meal plan & the pain was gone in two weeks. If I stray off low oxalates it returns overnight.
Has your doctor ever collected a 24 hour urine on you? That is the first test recommended to detect this oxalate problem. I only ask because it has made such a life changing difference in the pain department in my life.
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