Honestly what is the point of input programmes if they can’t actually help people in pain!
It’s outrageous I had to travel for over 10 hours to get to an appointment to which the doctor wasn’t even there so just 2 psychologists, who aren’t equipped to know anything about my condition or pain and they make a decision.
They said no because I’m in to much pain 🧐 isn’t that the point of them to help people learn to live with their pain.
So now I’m back to square one living with this being a 28 year old mother who can hardly get out of bed because of pain and no one seems to care 😔 I just want to get better
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Itsallinthehips
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Thanks for the reply. I am making a guess based on very little information. My guess could be wrong. So you need to investigate as to whether I am right or wrong.
The pain and spasms in the right hip is an attempt to limit the movement of the hip joint to a narrower range of movement so that you do not damage yourself. I suspect that when you walk you do not walk in a balanced way. I.e. you lean slightly forward or back and to one side. The head is also not quite balanced on top of the spine. There is neck tension which is tighter one side than the other rather than the same tension both sides.
In the body there are various spinal reflexes which act at the level of the spine movement centre and the movement centre in the brain is unaware of what the spine movement centre is doing at the point of time that the spinal reflex is taking place.
It is worth seeing an Alexander Teacher who can help you look at this issue and develop improved movement strategies. Another person who could give advice is a sports therapist.
It’s my left him and they are pretty much it’s hyper mobility syndrome. That’s not my issue the issue is pain and pain management. I didn’t injure myself or do anything to it and I’ve seen sports therapist before but thank you. I’ve pretty much done everything that most people can suggest at this point 😔
Thanks for the reply. Alexander Teachers are very heavily involved in pain management. I am way off in regard to walking. However there are things they maybe could do.
I completely feel your pain, I’m 31 with joint hypermobility syndrome and scheuermann disease of the spine, my left hip is bad too, I’m going to try a steroid injection soon, failing that it’s an mri.
My shoulders permanently are subluxing/dislocating, my neck needs to remobilised as C2 is affected, causing constant crippling headaches/migraines.
My scheuermann's disease means I’m stiff across my bra strap line, due to it not being formed properly, causing me breathing problems, with the dislocating shoulders and neck problems, super tight jaw - makes my upper body- very broken, it’s all fighting each other.
My left hip means I can’t walk long distances and is darn well painful.
I also have the other fun side effects of jmhs, along with chronic pain and fatigue, all over body spasms, painful abdomen, sensory problems etc etc etc lol 😂.
I’m still working and my future scares me, I can’t inagine having kids on top.
There doesn’t seem to be a lot of help in the Kent area, other than a TENS, CBT, Thai chi, Alexandra technique.
I’m on a ridiculous amount of pain medication, but can’t take it at work, there’s no help for the people in between, if you’re not claiming disability then they can’t help you with housing and accessibility etc, although I can’t work full time hours (I’m not allowed!) and earn as much money as other people I work with, so therefore am struggling to get a place of my own and afford it.
I think there isn’t enough help across the board, with people who are living with long term conditions and connective tissue disorders. If I go sick, which I do, I can’t adford to live. I feel I’m trapped between, work, pain, housing, costs, anxiety and even depression and life, no access to the right help, finding the right meds and me ‘looking normal’ - get brought up a lot and being told ‘I’ve got what I’ve got, so I need to cope’.
It’s so difficult, if my left hip goes, I can’t use crutches because of my shoulders dislocating and my body wouldn’t be able to manage, I feel trapped and there just isn’t enough help out there, you have to find specialists, then pay a fortune for the pleasure of keeping them, I pay £45 for 30 mins of physiotherapy.
Hi, I have had back pain for 10 years and manage it reasonably well using drugs and other techniques but have had a huge flare-up and was transferred to a pain management course. I am not impressed!! Any comments please?
The course is centred around managing your pain by exercise, meditation, mindfullness, relaxation while “understanding” that pain can’t be controlled long term by drugs or by physical intervention. The practitioners seem to have been seduced by certain unproven theories from which they cannot leave. All these activities may help some people but they should not be seen as a panacea. For example I had terrible pain in my knee which was described as referred pain and was prescribed exercises and paracetamol. After a year of agony, taking strong pain relief, my request for a scan was granted, I saw a orthopaedic specialist who operated successfully and consequently no more pain!!
That’s great for you however the issues I have aren’t going to be solved like that. I’ve had this years and it’s not something that can be cured, I need better pain management I’ve had multiple scans and that’s not the issue.
I've been on the pain management programme and actually have the implant in my spine which does help with the pain. But you have to have had failed back surgery. If anybody wants more information, just ask me
I know what your talking about. The input programme give you 2-3 weeks'training' on managing your pain based on acceptance and commitment theory. There is then an option to have an implant inserted into your spine. This implant can deal with pain in a number of other areas depending on how high up your spine the offending nerve is. Remember all nerve s go into/come out of your spine
My pain consultant referred me to st thomas, but because of my stroke I forgot quite a lot so my psychologist referred me to do just the course again. Basically I think anybody medical involved in your care can refer you. Everybody on the course is in major pain so I don't see why that would be an issue. I've had people on both courses with CRPS, ALL all sorts of pain. You need to keep an open mind about the course - I was lucky as I'd had ACT therapy before so knew a bit about it . A lot of hospitals do this now so there's probably one near you - I don't know where you live. My consultant said st Thomas were the best so I get hospital transport to take me there. Once you've been referred you have an assessment which can be by psychologists, OT, physio, nurses or the consultant. They then tell you if you've been accepted. You then do the course and if necessary get the implant - but the course is useful by itself. I can answer most of your questions if you have any and you can get a lot of information from the internet, even watch a video of the operation inserting the implant! Anyway just all of you have anything else you're not sure about x
Know exactly where your coming from. Even after they messed up big time with me, no apology no help not even now.Went to hospital in agony last night they offered me paracetamol after a hour I hate the NHS. Complain to management thats your best option unfortunatly.
Last time I got taken to a&e in s agony, waited 6 hours then given two paracetamol because that's all the nurses can do until the doctor see you. He gave me diazepam which helped a lot
What is an implant do? I have had knee pain for over fifteen years. Refer pain I think since primary said fine and sports doc. I wish more can understand what you need and can afford as it was shared. Much depend on where you live. You also want to be close to doctor when you don't drive and you want to be independent,but aware of the future. I feel lost often.thanks for sharing.
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