Hi I have been put on the waiting list to the Pain clinic group where you learn to accept that with Fibromyalgia there is no cure and pain killers dont do much if anything apart from adding more chemicals to our ailing bodies, there you can talk to people and see what they do about pain ,living, breathing,daily tasks the list is endless then only to be told at the end of the 10 weeks or how long they have you there for that the whole aim of the Pain clinic is that we accept the Pain and realize that we have to learn to live with it then and only then can we start doing what ever we want to do (horse riding) etc we know we will be in pain after and during but hey enjoy the horse riding your in pain anyway oh yes and also if we need longer than 1 hour to recover from all the pain then do less next time untill we learn how much we can do as we should recover within an hour. Correct me if i am wrong but i am sure i said i have fibromyalgia and always having pain that burns rips tears through your body like lighting bolts out of the blue, knees that wont let you walk very far and should you fall down wont let you get back up, achlies heels swelling,Pain under the buttocks so it is painful sitting or standing. i could go on and on But what i will end on What a waste of the NHS money having to go to this only to tell me that i have to accept the pain.. Pain killers dont work well i know that tried just about everything in the chemist, and should recover within an hour its a joke we dont recover and yes i think we accept already that we have to live with it cant very well turn around and say hang on a minute take this fibro back i will have something different please I just feel annoyed at these patronising doctors who dont know what it is like as they dont have it.
The Pain Clinic: Hi I have been put on... - Fibromyalgia Acti...
The Pain Clinic
Hi tasha2
I sincerely hope that you are feeling as well as you possibly can be today? It doesn't sound like pain management is the right direction for you? I was wondering if you have ever been referred for physio?
I have recently had my first appointment and it went rather well. My physio actually told me not to do half of the exercises that are on the standard Fibro list and she crossed them out on the sheets of paper I was given. She also told me that if I had any problems doing any of them that we could discuss it on my next visit?
I found this quite a pleasant surprise from what I was expecting? I walk with a tri-walker and I was expecting her to tell me that I didn't need it, but she said it would be safer for me to use mine! Overall, it was a good and positive experience.
All my hopes and dreams for you
Ken x
Hi Ken, I had been wondering how the pain clinic thing had gone for you so was really pleased to read your post here. It's so great to have suchh a positive experience huh. Lonng may it continue. I hope today has not been a bad one.
Take good care. Lyn x
Hi lynzard
I sincerely hope that you are feeling as well as you possibly can be today? Thank you so much for your consideration and kind words, I genuinely appreciate it. It is all going very well thank you. I just have to tell myself to be open with them and not perceive any interventions as a loss of privacy or dignity.
I have people coming tomorrow to instal toilet frames and raised seats and a wall seat for my shower. So I am turning all of this into positive outcomes and I gain independence from having these things.
It is wonderful to hear from you my friend.
Ken x
Why didn`t you take (I dont know if that is the right word ) LDN? That is low dose Naltrexone. It is medcine for MS and also for Fibromyalgie and other neurodegenerativen pains(?)
Hi Flautando
Thank you for mentioning this medication. I have looked on MS-UK and they have a large feature and the drug, although it sounds useful and effective, it does come with a warning of excessive side-effects. My wife has read the feature and says that she likes the sound of this medication.
However, according to the feature, it is new to the UK and not always available. As with any medication of this source, it is something that has to be discussed with a GP or medical professional before anyone should ever contemplate using it. So any members considering trying this medication should consult their doctor first.
I have pasted the MS-UK link below for anyone who would like to read about it:
All my hopes and dreams for you
Ken
Thank you for that, I would be really interested in knowing how you get on with it and how it works for you? As my Wife has MS and really liked the look of the drug. She is going to discuss it with her specialist!
Thank you
Ken
Hi I am new to this site , I was told by my rummie back in March that he was referring me to a pain clinic ,I have been off work since jan , went to dentist 3 years ago . For a check up but had a sore jaw , was told I was in need of a root filling , and he was going to do it there and then , and give me anti bionics , anyway he forgot that bit and I was so ruffed up at the end of it that I was just glad to get out of there. Any way that was the Thursday before the royal wedding by the following Thursday I had been rushed into hospital with a mysterious illness , put on a drip and lots of meds . Stupidly I decided I should go home after 24 hours as my daughter was sitting her a levels , and I did not wont her worrying about me , I could hardly walk but I would not be told and it was a Friday . They needed the bed , spent 6 weeks home then went back to work and really should not have but did not realise how ill I was and still am I have fought this every which way in denial . Anyway the saga continues first they said I had reactive arthritis and chronic fatigue , 12 months later they started mentioning fibro as well , then rhuematoid arthritis , last august they found lupus anti bodies in my blood and started treating for lupus I thought , anyway felt better till Xmas then started feeling really unwell by the end of the year , then in March they added sjorgens, I went to GP in jan with really bad breathlessness ,had chest X-ray bloods ,ECG ,C T scan , lung function test asthma test , echocardiogram , they tell me that it's all ok which is good ,
However I am walking like I am 80 I get breathless I wake up in pain some days I have to crawl down the stairs , I can't change my bed because I can't lift the duvet ,they took my off hydro chloroquine because of my eyes I am still waiting on eye specialist and lip biopsy and it has been recommended by rummie I have my tear ducks blocked I eyes are completely dry with their shimmer test they did .and I thought the pain clinic was to help me get some relief The neuralgia in my hands feet and head is arwful . So please excuse my rant but basically they won't be giving me anything to help get my life back in the pain clinic if I understand your post correctly , by the way I am 52 but my GP thought I was early 40 s today I was a sailing down church tower for charity 4 months before all this started and flying power kites , and riding bikes and in a walking club and working a 42 hour week , I am at a complete loss
Hi Maybe in your area it will be different i think it is up to the so called specialist from mine i know more about where he lived in africa and his dogs i think the appointment was for him not for me hopefully yours will be different i always seem to pull the short straw when it comes to doctors
Hello and welcome to the site. This is one place where you can rant all you like and we will all understand. Been there, ect ..
I have not needed pain clinic but a lot on the site recommend it though it is not for everyone. It is well worth giving it a try.
No I`m afraid that you wont be getting your life back the way it was, but a lot can be done to improve it.
I don`t know how much info you have been given. If you click on the butterfly at the top of the page it will take you to our mother site where you will find a lot of information. Take a look and then you can come back to us with any questions, another rant or to join in with the general chat. You are now amongst friends who do their best to help and support each other. hugs sue xx
Hi sue thank for the reply ,the only info I have been given is about lupus , I researched sjorgrens , and raynaulds my self , I joined the lupus site when I got poorly in jan and when I haven't been sleeping and my hands arnt to bad I have been on my I pad , my daughter bought me a stylis which has made this easier ,I have got to admit it's been quite a learning curve , and I feel quite ashamed I had no idear how bad fibro and chronic fatique was I have been adamant with my consultant that he was wrong about both those diagnosis , but I have reading everybody's posts on here for about a month and I know realise I was wrong .everybody on here have been helping me so much . I live alone as my son is in Brighton working as there are no jobs here for the young and my daughter is at uni in Birmingham , she is off to japan to teach English for a year in august , and I have insisted she goes and does it for me as well as her . Social services are know involved with me I was assessed last week for a home help and the mobility lot are coming sometime in the next 2 I think , my life is a little bit of a mess at moment but as I always say it's could be worse . My dad died a few years ago from leukaemia I nursed him and got divorced at the same time , i live in mid Wales ,so with my rant last night which I must apologise for thank you for replying to me Christina
Please don`t apologise We all need to let off steam from time to time.
I live nr to brum so i am not far from your daughter.
At the moment I am waiting for the result of my PIP medical and am hoping to get something to help keep the car on the road, with hubby disabled as well, we can`t even get a loaf of bread when the cars off the road.
I used to walk for miles now I struggle to get around a small supermarket. The only way i can is by holding on to the trolley and using it as a walking frame. 
Camping hollidays are going to be fun but that is one thing that I am determined not to give up.
Oh well better find something for dinner. see you later hugs sue xx
Sweetheart, I don't know where you live? But here in the US it's not like that at least mine isn't. I don't believe anyone should be treated like that. There are medicines that can and do help. It's just unacceptable to be treated that way. I feel so bad for you. I pray you find another pain clinic and can get the help you deserve. xxxx Mitzi
Hi,
I hope the Pain clinic will help you. Being sent on the Fibromyalgia Pain Management course was the best thing that ever happened to me. They believed I was in pain and they helped me with ways of coping with it,The people at the pain clinic seemed different to the usual doctor " you'll just have to accept' type. I must admit I felt very similar to yourself before I went but it really did help and it was also the route for me getting some extra support I needed.
Hugs
Jillyxx
I went to the Pain Management Clinic today , after most of my life in pain I told my GP in 2019 I cannot cope it took 19 months to get an appointment to be told its for life and I need a psychiatrist to tell me how to feel better about it. That made me want to give up altogether as I only see one way out of the pain now
Hello jhorsf. So sorry you are feeling so low. Honestly we do understand. But don’t despair.
Lots of people have found a way to cope with this truly horrible condition. And they are on here and want to help you. We always say that this is a club nobody wanted to join. But now we are all in it together - we try to help each other make the best of it.
Please spend a bit of time reading the posts. Nobody is a professional - but we are all experts on how to inch our way to a better understanding of what might help. Just give it a go.
Thinking of you and sending you best wishes. Xxx
There are many options for learning to live a decent life with the pain. I’m happy to talk to you about them if you’d like?
I really do understand how cr@p it can be. And I cried in utter despair when I came out from the Pain Clinic.
But things can get better. And there’s a lot you can do yourself to help. Please feel free to ask me for ideas.
P.S. please seek help this evening if you do feel suicidal xx
Please do reach out for support. However, while I cannot speak to your individual situation the role of a psychiatrist in chronic pain can often be a challenge but worthwhile. Treatments like CBT/ACT can address how you deal with pain rather than lessening it. There have been people on here and elsewhere that have had their lives improved by the intervention.
Its not the only treatment but I would not dismiss anything that is offered. Try it and see if it helps. Not everything works for everyone of course.
Hi jhorsf nice to meet you. I am sorry to read your going through such an horrible time.
Have you tried a self referral to IAPT its a talking shop service. They do one to one f2f with no time limit on how long you can be seen. I found them very helpful.
Also please if you do have dark thoughts or just need to speak to someone right now have you tried reaching out to the samaritans. They can be so helpful in a time of crisis.
The link below will give you their number to call. Please give them a ring they may be able to help you move forward.
samaritans.org/how-we-can-h...
Please feel free to keep posting here too. We all know what its like to live with chronic pain. You are not alone and we do understand xx
Momo
well the trick cyclist is at least a year to go to a group so , 3 years after going to the GP saying I cannot cope any longer with the pain I will get some sort of appointment to a group . You would not treat a dog like this ! I think I will try chiropractic clinic and pay . I have used this before when working years ago with some success. When I asked about physio and traction , OH we dont do that anymore . I asked about MRI scan oh it will only show wear and tear , what use are they really . Dont rely on scans they say . I fail to see how they expect anyone to cope with such pain 24/7 , All treatments seem to be about coping not finding the source of the pain if there is one , they keep telling me its my body that is oversensitive to pain , how if you have no tests do they know that!
Have they done blood tests?
And have you looked at free pain reduction programmes like this? fibroguide.med.umich.edu/pa...
I pay for physio privately as can’t get any more on the NHS.
Have you ever tried a TENS? X
Yes they have done blood tests , yes i have a tens machine for many years , I will read the link thanks
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