pain clinic

hi, I wondered if anyone has experience of the chronic pain clinic at Leith in Edinburgh? I was there last week and (despite being hopeful going in) it was an awful experience.

[Blue-52]

Hu, I don’t go to your one , but what on earth happened?, sorry it was so bad.

[Hidden in reply to Blue-52]

Thank you so much for responding…I had been referred almost 2 years ago (by my rheumatologist) but was initially offered a group programme via zoom from the psychological services team. This was not what my consultant had asked for but I went along with it and it wasn’t helpful. Re referral made and I eventually was given an appointment to see an anaesthetist who was a pain ‘specialist’. She was truly awful…as soon as I sat down and I saw her looking dismissively at the pain chart I’d had to fill in, I feared the worst.

Basically I spent almost 30 mins justifying my experience of pain to be told that, there’s nothing more they can do and I just need to see someone in adult mental health to allow me to ‘accept the pain’. I have had psoriatic arthritis for almost 20 years and was additionally diagnosed with fibro almost 2 years ago, then degenerative spinal disease about a year ago. I am well able to differentiate the different sources of discomfort (mainly) but I feel that everything is now being lumped under ‘it’s fibro’ so just get on with it.

[Blue-52 in reply to Hidden]

Ahh what a shame, here in herts, it’s nothing like that, they refer you, and also try and help with pain meds, might be a idea to have a chat with your doctor, and explain what happened, sorry but some are just like that . Good luck.

[hazelcats in reply to Blue-52]

Hi Blue- was this from the Stevenage\Hitchin based clinic? I have an assessment with them soon, so reassuring they may be better than others poor experience.

[Blue-52 in reply to hazelcats]

Hi, yes, they are very good, because I can’t tolerate any of the fm meds, he put me in touch with a pain specialist professor, also physio, 3 monthly pain injections, every 3 months, depending on who you see, mine was brilliant.

Good luck, make sure you have everything written down, as they are really busy there.

[hazelcats in reply to Blue-52]

Thanks so much Blue, thats really encouraging. I should have an initial phone appt set up this week. I am struggling with having 3 chronic pain conditions and have no idea what I am doing may be making things worse and in some ways self medicating.Physiotherapy is my no 1 need to get right. Thanks so much for your reply.

And yes I am always getting notes prior to and after any health appt. 😁 thanks again

[Blue-52 in reply to hazelcats]

Ahh bless, you will be fine, they will know if you need physio, or not, relax and just get as much information as you can. 😉

[Loobielu in reply to Blue-52]

Hi, that's fascinating to hear you get injections every 3 months that help. May I ask what they are injecting you with? Thanks 😊

[Blue-52 in reply to Loobielu]

Hi, I have nerve damage in my neck and spine, plus multiple disc damage. Under a guided scan, they inject cortisone, it’s not just for normal fm pain.

[Loobielu in reply to Blue-52]

Hi, that makes perfect sense. I'm glad you have something that helps as that sounds like an awful amount of pain. I appreciate the response 😊. Take good care

[Blue-52 in reply to Loobielu]

It is a lot, thank you. 🤗

[south1966 in reply to Blue-52]

Hi, I'm sorry to hear about the pain you are experiencing 😢I too have major neck pain, I think it's nerve damage on top of stenosis and am currently having every holistic treatment possible but to no avail is it working😢..I am becoming desperate now as the pain is unbearable, but I'm terrified of the injections, how painful were they and did they work...gentle hugs

[Blue-52 in reply to south1966]

Hi, thank you, I know it’s very painful, but you would have to have scans done, to see if it is nerve damage, the injections themself don’t hurt, they are guided by a Xray, I personally can feel the fluid going in, others may not, I did have one bad experience, when a trainee, didn’t line it up properly, and the pain was excruciating, but that is one in goodness knows how many, depending on how much nerve damage there is, you will need more than one injection, I have up to 4, sometimes 5, they last around 3 months, they take the edge off, but not completely the pain, but pain is bare able .if you feel too much pressure on your neck, you can have a neck brace fitted, please don’t just buy one, they have to be properly fitted.

I hope you get the help you need, take care.

[hazelcats in reply to Hidden]

Sorry its been such a bad experience for you. I would feel very ' dismissed ' with such attitudes. I do accept MH can be affected by physical health ( speaking for my own self here ) but I solidly feel correct and supportive help with the physical pain and symptoms would help my MH as well.I have an appt with a pain clinic soon in the Herts area, phone assessment first. Fingers crossed.

[Cotswolds25121 in reply to Hidden]

Disgraceful attitude from the so called ‘expert’🫨 I wonder if she would be happy to be fobbed off in this cruel way, I would guess not 😤

[Bolognese2022]

I don’t go to your clinic, but my initial experience wasn’t good. The Consultant had asked his secretary to see if patients would accept a telephone consultation, I refused and wanted a face to face consultation as I have a hearing impairment.

When I got there he had two masks on so I struggled to hear him. My mistake was asking if I could move my chair closer due to my hearing impairment. He proceeded to give me a lecture, very rudely. I answered him back with the same attitude.

As the consultation continued I made him repeat himself a lot😁 He was very helpful in the end!

[Cotswolds25121 in reply to Bolognese2022]

🤣🤣👍

[Gkb642023]

I felt like a complete inconvenience when I was referred there. I honestly believe that the consultant could not have been less interested. I was referred to the pain clinic at Astley Ainslie but didn't get a lot out of that. The only thing that change was my medication at the time. I had been on Gabapentin and put on a lot of weight which was not helping my pain or my mental health. I asked if there was an alternative medication. I was then put on pregabilin which has the same side effects. I eventually came off all the medication.

I just felt so dismissed by the "experts". It's also not the easiest place to get to either.

Accepting the pain is easy to say and hard to do when it has stripped so much away from you.

Take care.

[Marchhare7]

Hi, im sorry to hear you had a terrible experience, its so disheartening when you have waited so long to be seen.

Im down in the North West and had a similar experience. Once i was triaged i was offered appts, one each with a pharmacist, physiotherapist and psychologist. The only person who was warm, understanding and helpful was the pharmacist. The other two were awful. The short story is the they have pain management programme (10 weeks) which they offer to everyone. When i pressed for details and they closed ranks a bit, i got suspicious, turns out the service is an MSK pain programme and not a fibromyalgia pathway as id been previously told. They admitted eventually that i was too complex for them (my fibro is post cancer treatment ) but still says i was welcome to come to group. My other option is to be referred to the regional pain service which is delivered by our neurology specialist hospital. If you have one in your area it may be worth looking into them. Also the NICE guidelines have been updated around treatment of fibromyalgia but it seems my service hasn't caught up yet. I suspect both our services are running the same model which is a shame. I hope you find some support, defo go back and speak to your GP.

[Nipper11]

I feel very sorry that you had to go through this experience. The pain clinic courses I been through have been fantastic and helped me understand so much. I would suggest you get on to your local council and make a complaint about this function and pain doctor that is put there to help you and others mindset and wellbeing and better quality of life.

Please make a complaint as this is not fair that anyone has to face judgements on the pain levels and illnesses.

We as the public paying towards there salaries and therefore a very good reason you should receive a supportive response and service.

Push hard to get what you deserve and see a different pain Consultant .

The council should be able to advise where this complaint needs to be addressed. Talk to talking therapist website. You can speak to someone there without making judgements comments and they should be able to help you with your complaint or advise you how to follow the process. There will be other support functions they will share with you and talk you through the way this has made you feel.

Pain changes so much in your life and your mindset is key to understand how to support yourself. Some suggestions which may help you .

Stretching your muscles throughout the day .

Moving Everyhour.

Drinking more water.

Eat food with high vitamins

Look at your diet some foods make your pain worse .

Lose weight it will help joints .

Rub warm oils into your muscles.

Magnesium spray oil into your muscles.

Take magnesium vitamins.

Look on amazon for Fibromyalgia vitamins they also help.

Take vitamins C to support your well-being.

Look at your lifestyle.

Listen to your body symptoms and see if your making them worse.

Tens machine for pain. Buy them from amazon or pharmacy.

Look at your side effects of you painkillers because they could be creating issues for you and you may not be aware.

There's so much you can do to support yourself so don't give up.

do your research self-help as there's help out there. Good luck and hope you get through this bad experience. God bless and keep pushing because your worth it . 👌 xxx

[Yankeecandle34]

I know how u feel I went to pain clinic in North lanarkshire and she was awful to me she had me crying she wanted me taken off other medication that had nothing to do with my fibromyalgia! Just didn't like the way she treated me I would never go back she kept going on about my depression and axienty aswell and says everyone ages as I Said I had wear and tear she's like I have wear and tear in my face look... so I know how u feel hun. Sorry 2 hear about ur experience x