Good afternoon all and thank you for taking the time to read my post.
My Rheumatologist has recently booked me to a Pain Management Clinic. I have been diagnosed with Severe Fibromyalgia plus underlying issues namely disc Degenerative Disease/ tempormandular joint disorder/multiple white lesions to the brain/ inflammation to both feet. I have that much pain I sometimes wonder how my body is coping with all that’s going on. I have been taking for over a year amitryptalin 10mgx 5 daily plus Tramadol 50g every 4 hours. Nothing helps only makes me feel more zombiefied daily. Physio have said there is nothing they can do because the Fibro is affecting to many parts of the body.
My question is how can or what will this pain management clinic offer. I would appreciate anyones views who have also taken this path with pain.
Thanks for reading everyone now back to my Tens Machine. 🤦♀️
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Nell1
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I was referred to pain management clinic twice. For me they did not offer anything unless you are prepared to take medications. Apart from meds I’m not sure if they offer anything else
You might have a really long wait for an appointment with the NHS. Certainly in South Wales, where I live now, the wait for a first appointment with Pain Management is 46 weeks and after that you wait again to be invited to join the course/programme. I did my own pain management course in Leicester and it was excellent. There is an online course that one NHS Trust has made available and it is worth looking at to see the sort of thing that the programmes cover. This link will take you to it pat.nhs.uk/pain-management-...
Thank you so much for the link! I've been waiting nearly a year for an online course. I've done some work on pacing on my own which helped. But am now working my way through the course on the link!
I’m waiting for the pain management clinic and I had a physio for one year. Just I’m wondering. Who is more effective? Physio or pain management clinic?
It had been requested by my GP to refer me for physio but when I tried to make the appointment Physio said they would not do it for Fibro as multiple regions of the body would have to be worked on. So I cannot make a comment to your question. Sorry.
I have recently finished on the Pain Management course (nothing I already didn’t know). Pain management are just going to request my medication is changed as it’s doing Nothing for my Pain. That’s really it. I’m no further forward than I was 6 months ago 😢
If nothing else i hope you connected with people and made a friend or 2. Our pain clinic in MK has a monthly meet up which is all good if you live close enough and sure it benefits those who attend.
Yes, understand. I think it depends on the body. I have a family diagnosed with fibro. She is okay with the pain management clinic. But she is back to work after 7 years just for a few hours a week. It probably a long time and a difficult time but we need to be positive Do u think I can get physio while I’m at the pain management clinic or do I have to wait until PMC referred me? my physio said I can do both. Then I find out I’m signed off from physio because they transferred me to PMC. Because I’m getting worse with my DDD I’m not feeling confident about waiting weeks without being under physio
pain clinic had a ultra sound guided pain killer for the ultra sound guided steriod injection into joints, my next rhummy just went straight in with the steriod no messing with the pain killer or the electrics. all hurt was incapacitated next day.
each year have a injection of steriod in the backside for an allergy, due to world shortage of normal one this year was 'kenlog' it has a side effect that is very up and very down in mood felt all at odds.
The reason mention is it goes into every cell every joint. may help your fibro.
Thank you fmlife. The rheumatologist did give me a steroid injection on my last visit to him In early May. Said it would take 24 hours to take effect. Unfortunately no relief at all. Following my Facet block injection also in May 2022 and no relief surgeon has suggested Oblition of the nerves in my lumber. Whatever that means. Due Early Sept 😬 this Fibromyalgia has caused numerous underlying extra conditions apart from the normal pain. I am at my wits end with body pain. Don’t know what to blame the next pain on. I’m thinking the Pain Management team will think I’m a lost cause, and not knowing what if anything to attempt next. Thank you for the advice 🤦♀️
Do you mean a denervation? I had it done on my neck after trying a nerve block. As I understand it they burn off the nerve so there is no pain signal, the nerve can regrow but it takes time. The procedure itself isn't that different to the nerve block you had. A denervation is longer lasting than the block. I hope that helps, although ask your specialist for details as I'm just a patient.
may wish to research 'udder mint', it is designed to treat bovine udders, (slightly out of fibro box) however there are some interesting online claims, that may raise a smile.
I had sessions with a psychologist- we looked at breathing techniques for pain and mindfulness.Some of which I have found very helpful when things are too much
I’m in a similar situation to you apart from leisons.
I stopped taking all the meds a few years ago, as I was constantly putting more weight on.
Some of the breathing really help me, when the pain has taken over again.
HiI have just had a steroid injection at the pain clinic into my back as I suffer like you. It’s early days but seems to have really helped as I feel my muscles were stuck in spasm. I’ve waited a long time and eventually feel I’m getting somewhere. It’s amazing how when back pain is relieved, the pain elsewhere seems to too. I also take pregabalin
Hello, I’ve never been too a pain clinic but I see you have had some good replies from members, you have alot too contend with on a daily basis so I do hope you get the help you need. xx
Hi Nell1 Pain management is more about your state of mind and how YOU manage your day to day routine. It is very personal journey and everyone is different. Along with drugs trying different medications they offer support and non invasive treatment.
I've had 3 different types of pain management over the years and the only one that made a difference was the way I think about pain.
Yes I'm in pain daily , but it now doesn't define who I am . I know I'm going to be in pain but it is what it is . I'm lucky to be alive what with the story of the young child who's life support was turned off by the medial profession I feel lucky to be alive and the pain reminds me I'm still alive .
I hope that you find some way whatever that may be to help you live a better life .
Wow..you got an appointment fast 👍🏻😀. Looking at 26 weeks before even assessment for.In my area there is Community Pain Clinic and Hosoital pain clinic. From Community Clinic experience it felt like a waste of time and money fob off. Chat, chat, chat and nothing more. Waste of resources. They have no actual ability to do anything, just refer on . Wastes a lot of time tbh and leaves the pain!
Hosoital Pain Clinic ??they can/will do appropriate procedures and generally get to this one if Consultant refers.
Depending on what’s causing pain they can offer, steroid injections, denervation etc.
Some have said that Pain Clinics can try and teach people how to ‘cope’ with pain 😡😡😡. Obviously they don’t have the pain! So hard to live with.
Meds…being zombies up with meds isn’t the answer (I get have to when no choice). However, meds concoctions have been known to actually do no good as they create further body toxins, especially long term.
I managed to see a pain manager very fast as it just so happened that a local private hospital was picking up NHS referrals. I’ve had steroid injections to back and a lidocaine infusion, and I’m going in for pulsed radiofrequency ablation this week. She is lovely but unfortunately nothing has really helped so far. I have pain all over with good and bad days. If you haven’t tried already look into the Curable app and the mind body approach to pain. As others have said, it’s about how you look at the pain that can make a difference. Good luck x
Hi I have been to pain clinic they suggested talking therapy group meeting, basically didn’t help. I tryed steroid injections it helps short term for me, acupuncture helps slightly but costly. I was told you just have to live with it.
Sorry you're in so much pain. I found my pain clinic to be helpful. They hold a series of classes which helps you to understand how fibromyalgia affects you and lots of ideas and suggestions on how to make it more manageable. Obviously every case is different but I learned a few things and just the fact of being with a few other people in the same boat was nice,I felt less isolated and I kept in touch with a lady living nearby . I would give them a chance, you might be pleasantly surprised xx
Hi Nell1 , I had pain clinic within few weeks because someone cancelled and I was on the waiting list. The pain clinic I went on lasted for 3 weeks, every working day 9am - 4 pm . Very intense and they want you to come if you have a flare up or not so they see how you actually are. We could lye down when we needed, rest as long as we attended. We did mindful movements every day, but we did as much we could on that day. We had physiotherapist, psychologist and nurse there. They all had their sessions with us and also 1:1 with us. Once we completed it we had graduation. It was only group of 9 people. I enjoyed it and find it useful. Definitely take it if it's offered to you, I think as you have nothing to lose. Take care 🙂. X
I asked to be referred and waited about 6 months and it was a zoom appointment with a qualified physio who had trained in pain management. I was offered hydrotherapy but there is over a years waiting list. He also offered acupuncture with Tens attached, mindfulness etc and said I would wait about 3 months for that. The appointment was in January and about two months later I had a letter from the hospital saying due to the back log because of Covid they would have no appointments in the forseable future. He did say if the pain got unbearable in a certain area of my back to contact them about having a pain killing injection but due to the above I am not overly optimistic. He did tell me to use lidocaine patches every night in that very painful area rather than wait until the pain was at its peak. Such a shame about the lack of appointments as I was thrilled I had been listened to and was looking forward to trying the treatments.
From what I have heard from people what is offered seems to vary from region to region, I do hope they can offer something to help you. Good luck.x
Hi, I am under the pain management clinic at my local hospital and my consultant is fantastic. I have trigger point injections every 4 months and will also be having a supra scapula nerve block with my next appointment. Sadly though this only treats the pain in my neck and shoulder from my Myasthenia and Arthritis. I have fibro pain and “burning” in other areas of my body that is just treated with daily pain meds. I am on Gabapentin for my fibromyalgia, Celecoxib and Methotrexate for my arthritis and the pain from my Myasthenia is treated with morphine patches and oral morphine for those days that are extra bad (actually it’s usually nights that I have to take it rather than during the day). TBH, I am never totally free from pain and have had to just live with it as best I can because I really don’t want to be taking any more pain medication.
Glad it helps, fingers crossed that you get the option of patches. They are very versatile because you can change the dosage depending on how much pain you are feeling. After my trigger point injections, I can usually cope with 10mg but as my pain gradually increases again I can increase to 15mg and then up to 20mg if I really need to. If they don’t automatically offer the option of patches, don’t be afraid to mention that you would like to give them a go ☺️👍🏼
Definitely want to try. I’ve spent the last 15 months increasing the dosage of meds with little or no relief. Plus Facet block and steroid injections. It’s the first request I’ll be making when I get there 🤞
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Do u think I can get physio while I’m at the pain management clinic or do I have to wait until PMC referred me? my physio said I can do both. Then I find out I’m signed off from physio because they transferred me to PMC. Because I’m getting worse with my DDD I’m not feeling confident about waiting weeks without being under physio
Anyone with experience of pain management clinic?
Anyone been to a pain management clinic? One in Leicester?
\"Simple ways to manage pain\"
Pain clinic appointment 
Pain management change of meds.
