Hi there I'm new to this forum and wondered if anybody has had experience with a pain management programme? I have suffered with worsening back pain over last 10 years. I first had problems when large muscle in my thorasic back went into spasm when I was pregnant with my now 20 year old daughter. Over the years things have deteriorated ,seriously in last 4 years. My diagnosis is I have 2 degenerated discs at bra level(this causes muscle spasm) I also have 1bulging and 1 herniated disc at lumbar level. I get pain and weakness down my left side and left foot often cold.
I am on 40mg bd of Oxycodone, 600mg Gabapentin morning&night and 300mglunchtime,20mg Baclofen 3xday plus regular paracecetamol. I also have 15mls of Oxynorm liquid 4 hourly as required for breakthrough pain.I have had trigger point injections into the muscle which has helped to a degree but am still in an awful lot of pain and have very limited mobility. I have been referred to St Thomases in London for a residential pain management course. I wondered if anyone has been on one of these courses as it sounds like a great idea but also sounds very physically Intensive. My husband is concerned as to how I will be able to manage physically and also pain wise. Wondered if anyone has done one of these courses?
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I'm a St Thomas' patient - I went through all the consultations and assessments pre having a spinal cord stimulator. Part of the assessments was to meet with the psychologists, the physiotherapists and the specialist nurses who run the Input pain management programme for them to decide whether I needed to do the programme before going forward for SCS trial. They decided that I didn't need to do it as I am already doing all the things they teach.
I really, really recommend all the team to you - it's an amazing unit and all the various specialists are so knowledgable and really skilled in working with the very complex chronic pain patients like us who get referred there.
I've been in contact with many people who have done the programme and all have benefitted from it - the most important thing is to keep up all they teach when you go home! I think we can really underestimate how effective psychological approaches to pain can be ( me included until I really gave it a chance!!) We all look for the silver bullet to cure our pain, someone or something else to fix it.
I'm certain that all the staff would be very supportive and wouldn't expect anyone to do more than they are able but would encourage you to try all the mindfulness, psychological approaches, pacing and gentle movement whilst they assess and teach.
As Daniel87 says, it is a highly respected programme, evidence based and if offered it I would highly recommend you take it as when you are und the team there the expertise is second to none.
As you can tell I'm a absolute fan! I've been a chronic pain patient for well over 40'years and have had many really good pain management docs but the Tommys team are on another level entirely!
Shirley - is there any input or help for, or from,those you live with? Or carers? So many close to you struggle to understand. They are the ones who pick you up when you wobble. Help through dark times and provide the hugs and smiles
There absolutely should be Pat - don't know how us guys would cope without people just like you. I'm not sure about the programme covering that as, as you know, I didn't do it but I'll certainly ask those who did and report back 😊
Big hugs and appreciation for all the partners and carers - it's a tough place to be to see someone you love in agony and not be able to fix it
During the four weeks, there is a 'family & friends' afternoon which is mainly for information about how to understand & care for someone with chronic pain which, in your case might not be informative but you can share experiences and advice. As for a separate support group for carers and relatives, it's a definite thing to bring to suggest should your husband get access to a course!! I don't know if other venues have the family and friends afternoon though.
I was thinking about others. Many times on this forum I hear how their partner doesn't understand
We are now on our 3rd pain clinic having moved from England up to Scotland and. as with the other 2, treats us as a package! What affects David will affect me. They look after both of us with a mixture of compassion and knowledge.
I've met 3 of the pain consultants and I thought they were really excellent - knowledgeable, compassionate without pity ( very important to me not to be pitied but to know that the doc 'gets it') and they really want to work with you to get the best outcome.
The reason they don't like 'over' use of opioids for chronic pain is that they talk about lots of research that doesn't support its effectiveness. That doesn't mean to say they try to take meds away that we have become dependant on and for most of us are really tolerant to over the years and needing higher and higher doses. they do encourage a reduction in opoids especially if going forward for SCS, but they support with the reduction plan.
I don't know about you but I've been on very strong meds for decades and ultimately they don't work because tolerance creeps up SO quickly and then leaves us nowhere to go when we've exhausted all,the various options of meds at way more than maximum dosages.
I was stilling taking heavy meds including opoids before my SCS and am still in the process of trying to reduce and they have been absolutely fine with me.
I believe they are advising from a solid research based opinion but absolutely not without compassion for what it's like to live with the pain we do
Interesting, during a hospital stay due to swine flu and pneumonia pain consultant saw me and said about research shown that use of opiates not really effective in chronic pain. This has been since I was changed onto dosage I'm on now but have not had recent contact with pain team.I'm interested to see what St Thomases have to say or what it involves. Have to say though I am SCARED too about dealing with increased pain!
Been a combination of the pain clinic and my gp over many years can't remember exactly when and who started meds as different people have changed different things.
I've been in the Input residential course at St Thomas'. It really is a superb course and I highly recommend it!
Don't be worrying too much about the details of the course just yet; I was honestly the same as you being apprehensive about the physical demands and having to last a full day etc, etc.
Their approach is excellent and you'll actually be surprised about how so beneficial the daily 30 minute exercises are!! The other physical tasks are carefully structured so you won't 'over do it' or 'hurt yourself'. Honestly, honestly, it's so well incorporated into the psychology aspects that you'll find you'll be enjoying it (I know, seems impossible at the moment) and will look forward to the different 'sessions' from the nurse, physio, OT, psychologist and a visit by a former patient who has benefited immensely from the course.
It is strict time wise so no late arrivals in the mornings! Ours started prompt at 0830 by Big Ben's chimes so no blaming your watch!!
The accommodation is in the nurse/staff building; single sex three bedroom 'flats'. The flats are cleaned and beds made everyday by domestic staff and your bedroom has its own lock too so your belongings are secure from even your 'flatmates'.
I can't recommend the course highly enough; you meet people who understand your situation and its affect on your lives. It was ten per group when I went and we stayed in that same group for the four weeks. Generally people shared the 'flats' with people from their group of ten. You make friends better that way too.
Do go for it if you get offered it. Read my profile to see my 'list of diagnoses and problems'. You're very much like me from your description of your current issues.
From a medication point of view, the nurse there does do a review of your current regime on a one to one basis but they don't 'take anything away' just give you support to try to reduce some of it or maybe rethink about your needs. I was very sceptical at the beginning that I'd ever reduce anything but alongside the exercises, psychology & goal setting, I actually did decrease two meds slightly. The plan of course, is to continue with all the stuff you learn there once you get home in order to help you reduce even more but due to further disc prolapses and subsequent surgery etc, some of my meds have had to change, discontinue or increase but TO THIS DAY I still do a lot of the exercises that I learned there!! The psychology stuff now comes as second nature to me too, as does the pacing & goal setting.
I know I'm repeating myself here but it really is a valuable course!! What have you got to lose?
Thank you so much for information you have shared it's good to hear from somebody on a down to earth way of what the course entails. A few other questions are the flats like disabled friendly(I would struggle in like a normal bathroom. Also do you then prepare and cook own meals ect? So sorry for all the questions. I go for an assessment on the 23rd may and will be traveling from near Brighton to St Thomases and as yet not sure how getting there as can not manage public transport or walk walk very far as things are at the moment.
The flats have showers but if you're deemed to be needing more accessible accommodation, they have something called Simon Hotel which has rooms with wet rooms etc. One guy on my course was in a wheelchair so was living in the 'hotel' but I'm not sure what actually determines whether you get offered this. It's something that would be assessed on your assessment days; if someone has a wet room at home or other adaptations?
The course building opened at 0800 so people could make hot drinks & toast if they so wished but the flats have a small kitchen with a fridge, kettle and microwave if you wanted to sort your own breakfast. A hot lunch & dessert is provided everyday but you have to sort your own evening grub. There's a couple of shops within the hospital for sandwiches etc. The evenings are your own; the flats have a tv room, and the 'hotel' has one large tv room.
Regarding the travel to get to Tommy's; you have to sort this yourself. Whether you qualify for 'hospital transport' I don't know but it's worth asking your referring hospital if they'd consider it. If you're receiving certain benefits then you can claim back travel; as with all inter-hospital travel.
Sorry more questions are the showers like cubicle type thing ie just step in(my shower at home is over bath which is why I can't use it)re evening meal and drinks I'm curious to know if it's down to you as individual to get things in to put in fridge to access and prepare. Is there like a lounge area in the flats where you can spend time with others in the flat or is it a case of being in your room?Also is there a long way between accommodation and where course is run? So sorry for all the questions.
Yes, showers are cubicles so you should be ok with them.
Re evening food; yes it's down to you to get your own. There was tea & coffee provided in the flat kitchens but not milk although we were allowed to take some from the course unit up to the flat.
Yes, each flat has a small tv room to relax in; as you get to know your fellow members of your group, we spent time in each others' for a while although as the days are full, I was in bed by 2130!!
The accommodation is in the same building as where the course is run so literally a minute's walk!
They had three groups running whilst I was there, all a week apart so we could chat with the group in front of us and behind us at break times. My course was Tue to Fri whereas the other two were Mon to Thu.
It is good to hear some one is on this input course. I have been trying to get on the course for over a year now with no joy . Dr will only send me to the local pain clinic and each time my meds are increased. This does not help. Constant back pain lumber region. Please how did you get referred.
I have spent many appointments going back and forth,have received trigger point injections with some effect,epidural with no effect,been on and still on a cocktail of pain meds. Pain management was suggested some 3 years ago as has been going to rehabilitation centres but it all seemed to get forgotten. I have seen different people who seem to make false promises and a fairly recent appointment with a phycologist said I had to learn to be at peace with my pain!!! And to let go of the anger of mistakes and false promises but could not actually offer me any suggestions as to how I do this. It materialises that it's down to my gp to reference and fund pain management which we were not aware of but do need recommendation from pain consultants/phycologist.It has certainly a long process for me and I am not yet on a course I have got to go for a two hour assessment next month. I will keep you posted.
Generally it's a pain doctor/consultant that refers you to these courses. All to do with secondary care only allowed to refer to tertiary care.
It also seems to depend on how long you've suffered with your chronic pain, what treatments you've tried, how the pain is affecting your life overall and if it will be 'cost effective' paying for you to attend! It's not cheap and waiting lists have lengthened considerably. After my two assessments I was offered a place; there's no guarantee you'll get on the course just because you've been referred! I was able to attend at short notice too and six days after another assessment, I was offered a start date; it seems that people above me on the list weren't able to do five days notice to start!!
It's definitely worth asking at your next pain clinic appointment about one of these courses. Do you get to see the consultant psychologist at the pain clinic? Both the pain specialist doctor and the psychologist will probably need to agree that you'd benefit and other options have been exhausted before a decision to refer is made.
I had to have pain consultant say was my only option then had to see phycologist lady again which was very difficult as appointments with her are like hour and a half but rather than being supportive and helpful I found she talked at me and in a very patronising tone and manner. She told me I had to let go of my anger at mistakes and false promises (there have been several)and be at peace with my pain but could not offer any suggestions or help to do this!!
My GP only referred me after seeing it was mentioned in a letter from the pain consultant at the local clinic. If you can get you pain consultant to do this it may sway your GP, although he's absolutely allowed to refer and you can escalate this to the local commissioning group/your councillor/MP if needed. The other option is going private to one of the pain specialists - you need to meet a consultant/Dr first who then puts you forward for the course if they think you are suitable. I paid £250 to see one of the consultants. It was a three month wait for the input appointment and the wait for the course is six months plus, so a year from GP referral to starting the course. A private initially appointment can shave off three months.
I haven't been yet but have my dates for several months time. I have very little info on what really happens on the course and do feel quite sceptical as well as a bit hopeful. I'm not on a lot of meds but did get tapentadol from the consultant, it has no side effects, no wooziness and no withdrawal when I stop for a few days/ a week. My GPs are very unhappy about me taking medication, aside from psychological stuff which doesn't work for me and has horrible side effects, so I otherwise only have codeine. The local pain consultant was also anti opiates and pro brain drugs.
The dates I have only include three days rather than four per week, so two nights only. I don't know if this is a change to every course or just my specific month. I live in London so can escape if needs be. I've also been offered extra sessions to help prepare, they don't take the decision to offer a place lightly. Im also glad to hear about the medicine reviews and potential extra support following on. I know some staff work privately so was considering that - I've paid for a lot of physio already, the last telling me I'm in too much pain for her to help.
I'm still on Tapentadol, co codamol and if I absolutely have to I use Oramorph for breakthrough. Also on Arcoxia and pregabalin, Zopiclone and diazepam ( only for really ferocious spasm)
It's still fairly early days in my SCS journey. I'm 13 weeks post permanent implant and I'm definitely benefitting. I'm certainly not pain free but I was very realistic about what the outcome would be as I have very complex and wide ranging spinal and shoulder damage. My mobility has definitely improved and I don't spend most of my days and nights either in bed or my recliner chair.
It's a strange bionic life and not one that anybody would choose I'm sure but there was nothing else the brilliant pain management docs I've had for over 40 years could offer. As I type this I am connected to my charger and charging my left buttock - which takes about an hour each night. 😏
My pain scores are approx 30-40% lower, I am actually getting some sleep now which was a very rare thing previously and I've been able to reduce meds slightly so far and working on reducing further.
It was a really big decision but I'm very glad I gave it a try - I feel very very fortunate to have the improvement that I have had so far.
Hi I've just joined this group and am due to do the course this December with the hope of having a spinal cord stimulator it's been really tough for me recently as I am in the process of being dismissed for incapacity from work, they are putting me forward for ill health retirement I'm only in my late forties and my husband ( of 5 years) has recently left me, I would love to talk to those who have been through this process and had spinal cord stimulator fitted and how successful they are and what is a realistic outcome ? I perviously had a flexible stabilisation of my l4,5 l5,s1 in my early twenties and have hyper mobile joints in my back, some stenosis bulging disk etc.
I can't help thinking lucky you ....☺....my friend saw me and called the next day and said same thing ... there should be residential PM.......this is rare ...I have read about this wanting referral lol.... but I'm in Norfolk. .. I have done regular pm...appts and seminars😴...... ...I would probably feel same as you but this is an epic opportunity even if you find one thing that helps...they do this everyday. ...I really hope they can help you ... I would luv to know. Specialist physios ...can only help ..pain management. .. which pain what feeling where awareness and mindfulness generally x
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