Know about a Support Group? Pain Concern wants to hear from you...

Hello everyone,

We at Pain Concern are currently working on compiling a UK-wide directory of pain patient support groups.

Do you attend such a group? Please let us know about it. You will be helping others who also live with pain, and it may boost numbers in your group in the process!

We are interested in patient-led groups, and groups led by friends and family of those experiencing pain.

We are also interested in healthcare worker-led groups (as distinct from NHS pain management programmes - though we are looking at compiling a directory of those as well in time).

We are hoping that the directory will eventually be accessible (and searchable, for example, by postcode) from our website, and hence be publicly available to all.

Please reply with details below, or if you would prefer, email us at info@painconcern.org.uk.

Don't worry that we may have already heard of your group - we'd rather hear about a great group dozens of times than not at all!

All the best, everyone

Pain Concern

17 Replies

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  • I'm pretty sure there is one in Bath either the ruh hospital or the mineral hospital. I don't go their as it too far for me to drive in pain then back to Trowbridge again as well as cfs

  • Thanks very much Chazwitch. We will look into that.

  • your welcome

  • This is kinda pinching a list from somewhere else, but here are some:

    vulvalpainsociety.org/vps/i...

  • Thanks very much!

  • I don't know of an actual clinic at present, but I attended a meeting just over a couple months ago. organised between Mid Sussex N.H.S. and a charity to try and set meeting and discussion groups locally, but it all takes time. I am hoping for some feed back soon.

  • Thanks very much Hermes123. We will investigate that. Do you know which charity it was? Even just a rough idea of the name should be enough.

  • In the UK it's a good place to go, our pain clinic is in the local hospital & has specialist psychologists & pain doctors who basically talk to you & then gently examine you. My doctor is so kind & she understands. If it's fibromyalgia they suspect then they'll press the 11trigger points on your body & see if you react. Afterwards I was also given a letter for my G.P. who then gave me the pain medication they had advised & the diagnosis for my records. I go annually to them for check-ups & am sent on optional courses on how to pace myself & cope living with chronic pain. I was sent an occupational therapist who made adaptations to our house ie. an extra banister on the stairs, & aids like a rollater & a shower stool etc. It was the best thing that happened to me as I then get benefits & my doctor & family believed that I was ill, & actually have a syndrome-type disease & was not the hypochondriac they thought! So go is my advice, be honest, explain how you feel physically & emotionally & accept their help. Everything is worth a try, & if like me physio hurt like motherf-er & you can't walk for a week after it, just tell them, they'll suggest something else.

    You also need to read as much as you can about FMS & learn to help yourself too though. The major improvements you can make are, stop drinking fizzy drinks & consuming anything else with aspartame in it, get off sugar & improve your diet in other ways, that can reduce symptoms drastically. (It's all on YouTube what not to eat.) Good luck.

  • The Charity working in partnership with Mid-Sussex N.H.S. is called Nesta this is to be there third set up area in the country.

  • Thank you Hermes123 - that's extremely helpful!

  • Hermes123. Explaining Pain? I hope this is going to work? No i do not think it will but I will try to explain. Early this year I attended an intense session on what pain was and what we all could do better to manage pain, held by a senior physiotherapist it was very intense eight week course. On day seven of the we were asked to go away and think about what pain meant to me and and write about for the final week, I did and i was ask to down load it to the Hospital. Which I did, it was a poem called I just can't Bear it? it was based around the main charicter a grizzly bear who gets stung by a honey bee in his paw and kicks up merry hell about his pain, the person with said you don't real pain is, so the bear said OK wise guy explain it to me, so the person said you see that mountain of rocks behind you, now if they came tumbling down and one hit you? that would be real pain. I hope you get my drift.

  • Hi Pain Concern, I run a support group for people affected by fluoroquinolone toxicity. If you haven't come across this condition yet, it's caused by a quinolone antibiotic i.e. Ciprofloxacin, Levofloxacin, Ofloxacin and Moxifloxacin. The symptoms are basically huge pain everywhere and fatigue plus probably depression, anxiety and insomnia. The pain is caused by damage to the tendons, muscles and joints - some people suffer from tendon rupture (especially the Achilles). Most doctors don't recognise this condition and diagnose fibromyalgia, CFS/ME etc. Very few people who have been affected by these antibiotics realise what has happened to them. Ofloxacin in particular claims a lot of victims as it's given for prostatitis and epididymitis in very long courses. The other names are lately kept for persistent infections (UTIs, sinus etc) and are given when other ABs don't work. Our website is quintoxsupport.co.uk so please take a look and find out more about how these dreadful antibiotics work. If anyone can link their chronic pain to taking this antibiotic we may be able to help with advice (like avoid IBuprofen and steroids as they'll make it worse!). Some people are suffering 5 -15 years after taking the antibiotics yet no doctor seems to realise what's going on. There are many US groups but we are the only Uk group.

  • Dear Miriam W,

    Thanks very much for altering us to the existence of your group. I should have made clear above that we are only looking for region-specific groups, as the directory we looking to create will indicate what is available for the person in their local area.

    We do carry a few links to other national organisations on our website, but not specific conditions.

    However, we have taken a record of your organisation for our internal use. We would recommend contacting Pain UK, which is the umbrella organisation for pain-involving conditions in the UK, and which lists contact details for charities addressing many specific conditions.

  • Thanks for your answer and please do keep a note of us in case you happen to get someone along who knows they've been 'floxed' (as Quinolone Toxicity is often called). As I said, it's not very well known in the UK but the USA are beginning to make more of a noise about it and the FDA actually acknowledge it now - they call the problems Fluoroquinolone Acquired Disability (FQAD). I'm struggling to get MHRA to acknowledge it but will keep on at them!

    I will contact Pain UK in the New Year, so thanks for the suggestion - and a Good Christmas to you all!

  • Hi there. I attended to an intensive course organised by Pain Management Clinic from City Hospital - Birmingham,UK and I can confirm was quite helpful by explaining us how pain work, how to identify the triggers, how to avoid them, which kind of method we can use to make it easier,trying different approaches for pain , like meditation, mindfulness, Tai Chi, hydrotherapy, positive thinking, pacing, increase exercise even if is only a bit , but slowly , slowly you can help your body to not be too stiff which can cause more pain. Of course there were lots of information and I can said was very helpful.Should be a good idea to know somewhere is a person you can talk with and can understand your situation sometime even better than your own family. I know is hard to be positive when you are in pain 24/7 but I`m a cancer survivor and I know always could be worse, so I try to manage the best I can.

  • Is there not a way for us to create a group at least to get started and go from there?

  • Also I live in the US. Can't this support group include the US too?

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