Hi Everyone

[AffaSair]

My name is Chris and I am the founder of a chronic pain self support group based in the North East of Scotland, called "Affa Sair". Scots for "Awfully Sore". I have been in pain since 1978 starting with Ankylosing Spondylitis then changed to CRPS in 1995 following by-pass surgery for my legs. I also have cardiovascular disease and diabetes. We have over 430 members at the moment.

I recently attended the Scottish National Pain Management Programme in Glasgow which was a bit of a disappointment for me. Most of the benefit derived from that was the social aspect of being away from home so forced to be independent and Glasgow itself. The programme was not what I thought so perhaps could do with a better explanation upfront. I did find it extremely difficult with a seemingly lack of knowledge of chronic pain - certainly at my level. It was too psychologically heavy for my liking.

Medication for me is Pregabalin (which I am currently trying to wean myself off), Oxynorm and oxycodone 20mg for breakthrough, lidocaine patches and complementary therapies. During my 40+ years I think I've taken every analgesia known to man!

My main problem, besides the pain, is social isolation due to living in a wee town with no facilities to help me. Pain Clinic is 70+ miles away on diabolical roads. Return journey is about 3 hours - can be 5 or more on laughable public transport. My own GP is excellent and we work well as a partnership.

I am finding reiki, acupuncture and meditation of great benefit just now. I have managed to mediate for 105 days continuously and this has changed me frankly. I am more like I used to be, certainly a lot calmer. I do wish the NHS would prescribe complementary therapies as they are so damn expensive. It can be difficult to afford even one a month at times. I really need one a week of both acupuncture and reiki. Thankfully meditation is free. I use a great app called Insight Timer which gives 100,000s of free meditations.

I live with my wife of 32 years (number of years married - not age!) and two cats who we treat as our kids. Very sad but true.

Keeping a sense of humour through all the health stuff has just about kept me sane and I certainly wouldn't be here without my wife.

[Bananas5]

Morning Chris and welcome aboard.

We lived in Scotland for 12 years before moving to sunny Canary Islands!!

You said you went to the pain management course in Glasgow...is that at the new centre? Many of us fought hard to get it up and running...had many delays.

I'm sorry you didn't find it helpful. Many people do go with high expectations whichh are seldom met.

We were lucky with pain clinics...one at PRI where consultant worked out of Ninewells and the other at Wishaw. Always felt we were part of a 'family' where the whole team became friends. Consultant at Wishaw even came out to see my husband during Carers week...armed with huge bunch of flowers for me as his carer!!

I did attend several pain group meetings with David but he always felt uncomfortable. He has some serious injuries dating back 35 years but felt everyone's pain, depending who was there, was always worse

He did find a course run by local authority helpful and run by the CPN. As an old hand living with chronic pain depression...he was almost on the staff!

Now he attends pain clinic here although the GP's don't seem to listen to the consultants quite the same way. But clinic look after him and he gets appointment and treatment 6 monthly.

Hope you get some advice from this forum....some of us have been here a very long time!!

x

[AffaSair in reply to Bananas5]

Hi, thanks for replying. Did you work with Dorothy-Grace in getting the new centre up and running then. I work closely with DG now and met up with her when I was down in Glasgow.

[Bananas5 in reply to AffaSair]

Known her for years..yes we worked a lot together, I was on the cross party group for chronic pain under her guidance. Another name you may have heard...Susan Archibald? We worked on petitioning Scottish Parliament to get the Glasgow centre running. Susan has CRPS yet works tirelessly. Another precious friend

x

[AffaSair in reply to Bananas5]

Aye, DG speaks of her quite frequently.

[Bananas5 in reply to AffaSair]

Ask if she remembers Pat Onions too...then give her a hug.

x

[Hidden]

Welcome sounds like ur in the right place I also think alternative medicine should be more affordable n more accessible.

[Bananas5 in reply to Hidden]

Acupuncture was always provided by pain clinics.

Think the emphasis is..was.

x

[Hidden in reply to Bananas5]

In the US they push pain meds.Alternative medicine is an after thought.reason for opioid crisis.

[Bananas5 in reply to Hidden]

Sad cos so much research has now shown that more or stronger meds don't actually do anything.

They were' invented' for short term relief for camcer patients at end of life.

x

[Hidden in reply to Bananas5]

Exactly right ..but it's easier n cheaper to just write a script n help pharmaceutical companies make more money.we as patients have to be a voice in OUR treatment n not just believe what every doc says just because they r a doc.patients need to do there own research n decisions.

[Bananas5 in reply to Hidden]

Well certainly in UK the GPs are not handing over pain meds like they used to.

In fact many have been withdrawn due to the crisis in America...they ssay

x

[Davek723]

Hi there

I too have crps full body. I am scottish but live in leeds now. I've found it difficult to find understanding doctors specialists etc here.

Not alot of knowledge on crps .most telling me that it cannot spread which is untrue.

So i joined an expert pain group. I ended up becoming a volunteer and now run groups.

It's so rewarding so i understand why you do what you do with your group.

Here if i can help in anyway.

Cheers dave

[AffaSair in reply to Davek723]

Hi Dave, thanks for replying. I've had a really bad spell of really painful days so apologies for not replying sooner. Do you run any online groups or are they all in the real world?

[Davek723 in reply to AffaSair]

Hi mate.

Everything is in a group setting so i tutor for a group funded by the nhs. I also do a little bit for a group called smash .it used to be funded nhs but is now run voluntary by a couple of fellow tutors. It's building really well

.

[Daisychain12]

Thank you so much. Reading your posts with interest. I would love to stay in touch. Kindest regards. Linda (Daisy Chain on the PMR forum)

[Altamash048]

I'm suffering from this condition "EXACTLY THE SAME" for over a year now.

I have done more than 10 ecgs, echo test ,ultrasound and all came out clear.

I was also diagnosed with hiatus hernia….

My symptoms are exactly like yours… pain in left side, radiates to the arm, shoulder, sometimes makes the jaw numb as well, bubble on the lower side of the rib cage which obstructs breathing as well.

I haven't found a permanent fix but these things if you keep taking will remove the pain and probably fix in the long run.

1) Kefir yogurt (Get free kefir grains from somewhere and make yogurt daily and drink almost a liter everyday) *for all gastro issues plus promotes good bacteria – if you are in dubai…i can give you.

2) Nexum. *gastrointestinal issues…

3) pregablin (Lyrica) *Nerve related issues

4) Bromazepam (Lexotenal) *Anxiety

All of these are solutions to these.

I would suggest to try all and see what works for you.

For me all of them work specially kefir since its natural(organic) with no chemicals and still does the job.

Please let me know if any of the above help you out.