UPDATE: Well an update on my last appointment with the Pain Consultant where he told me he would refer me to one of his colleagues in case he has “missed something”. I got a letter yesterday stating that I had been discussed at the Pain Clinic MDT and they were all of the same opinion as him .
RESULT - instead of being seen by other Pain Consultant as he stated, I have now been discharged from the service. In the letter, he advised the next step for me was “acceptance”. I am now again at a loss, where do I turn? It seems at every service I see, I don’t fit the criteria and they discharge me. This has really upset me as I feel I am being dismissed by the NHS despite being in significant chronic pain for years. My parents are a great source of support and we are now looking at going private - I just don’t know which specialist to see for my ongoing health concerns. Again sorry for the rant, I just feel that people on this group understand what I and others go through with this horrendous pain that affects the whole body.Thanks for reading, I’ll now have to do a lot of research to see what my next step/options will be.Hope you are all as well as can be expected, Nicola xx
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Hi everyone, I am currently experiencing chronic pain in several areas of my body. I have a slipped disc L5/S1, Sciatica, degenerative discs in my back, pain in right shoulder due to two unsuccessful operations. In addition my right arm is painful with my hand having reduced grip/strength and pins and needles. My leg muscles have a constant dull ache and with my sciatica I get shooting pains down to my Achilles. My foot has also gone numb which meant I went over my ankle and tripped. I am also experiencing new neck pain which restricts the movement. I am unable to control my bladder at times. I am extremely exhausted all the time and don’t sleep well during the night due to all the pain. I currently mobiles with crutchesSorry I think that’s all my symptoms!! I met with a Pain Consultant today, he did not take the time to ask me about my deteriorating symptoms and made me feel like it was all in my head and there was nothing they could do. I asked him what consultant I should see privately and he said a pain consultant. I am at a loss and feel like I have absolutely no life due to my pain. I also feel like a burden to my parents, I know they worry and are emotional when they are not with me. I just don’t know where to turn to next, I have done everything the GP, Physiotherapist, Neurologist, Pain Consultant, Orthopaedic Surgeon has asked of me but I get no where. I have tried every treatment, medication etc they have asked me to try but I am still in so much pain and it’s getting worse daily. So sorry for the long winded post but I just don’t know what to do for the best. Any suggestions/recommendations would really be appreciated xx
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Hi Bananas5, thanks for your response. At the appointment, he stated he was going to ask one of his colleagues to see me but they disagreed with that and stated they had done everything they could for me which I disagree with. He was dismissive of me at the appointment, I had notes of new symptoms which he didn’t ask about and continually looked at his watch.
I completely understand about accepting the pain which I have slowly been allowing myself to do. I just don’t want to be on crutches for the rest of my life but it seems as though that is what I will have to do. I am hoping to go private but I have no idea which specialist I should see. Hope you are feeling well today xx
We all hope that someone, preferably the pain clinic, will tell us everything. Often they don't know the whys and wherefores just that it is incurable and only treatable with meds etc. Maybe you are told your spine is disintergrating? No cure. Would that make you feel better
Hi, I feel a diagnosis of what is wrong would make me feel better - at least I would know what I was dealing with. My friend who had to medically retire at 40 did not have any abnormal blood tests etc however, after perseverance she was diagnosed with a very rare autoimmune disorder. I’m not saying I have anything like that but she didn’t fit into any of the NHS criteria’s for certain specialities - which I have been told. I am scared about what is happening within my body and it deteriorates everyday but I do try. I work every week day to the best of my ability and refuse to give up but it is difficult x
Hi, sorry to hear what you are going through. I to suffer with multiple pain the abdominal and chest pain have been class medically unknown (no one wants to own it)I suffer with FND,COPD,GORD and AO of the spine also have a enlarged aorta. I to have seen many pain consultants at various hospital pain clinic's all with the same answer which is they cannot help. there are hundreds of pain medication's out there and found lots that don't agree with me , I currently take 8x paracetamol, 30mcg bunov pain patches and codeine as back up. I think you have to try any and all medication you can and find what works for you . my meds just take the edge off the pain and its always there to some degree. good luck for the future. kevin
Hi kev60, thanks for your reply. I have tried so many medications, patches, infusions etc and take reactions to quite a few - apparently I take after my Granny in that respect ha!! I was previously on about 12 tablets, each several times per day and was like a zombie. I work in social work with the drug and alcohol recovery team so I know the damage some can cause. I will just need to keep plodding along. Thanks again, Nicola
I get your frustration. I also was eventually fobbed off by pain clinic. The term was you will have to learn to live with it. Have you actually ever seen a rheumatologist? If not it might be worth a try. I finally got diagnosed after seeing surgeons, neurologists, physiotherapists,osteopaths, chiropractors,pain clinic. It did take 20 years though. Can you try a bit of yoga or pilates? It did help me but I had to start very very basic and had to take painkillers after for the first two months
Hi lupus_01, I was referred to a rheumatologist by my GP several years ago however they didn’t see me as I didn’t fit into their criteria. I do Yoga and continue with the stretches the Physiotherapist provided me with. Thank you for understanding. Nicola
My heart goes put to you, it's a terrible and worrying thing to go through.
Alot of you systems sound familiar to myself, I've been in chronic pain since 1982 similar damage to my spine. Since then I've got a grouth on my spine ( I forget what it's called but they can't operate). And of course developed RA.
I went to the pain clinic 18 years ago, they told me I was taking to many painkillers and there was nothing else they could do.
I've since reduced my painkillers, I found a mix and a level that suits me.
Tramadol oramorph and citalopram. I use co-codamol only for when the pain gets to much.
I've got an exercise routine that I do every day, one that does put pressure on my spine. Taking creatine monohydrate has helped tremendously, and of course taking three times the " governments currently recommended dose " of vitamin D.
This helps your body fight fatigue, RA as well as any viruses knocking around.
what I'm trying to say is not all is lost, there is a lot you can do for yourself and still live a reasonable life.
My left leg has been numb for so long I don't notice it any more, I glad the Sciatica has eased since I've been exercising.
What I'm trying to say is there is hope, making the best of what you can do can over come what you can't.
As you have probably noticed I'm dyslexic as well, that's something else I've had to learn to cope with the best I can, so sorry about the spelling mistakes I've missed.
From experience the most important thing for anyone in your position is to work on your mental health. How to do that? The first step is to seek out online communities of people like you, sufferers from chronic pain, and pick up tips from them. Wim Hof Method was great for me, as was (and is) mindfulness meditation. Optimising your mental health will certainly help you deal with the pain, and it might well reduce it too, it did for me.
Hi Scotsman 53, thanks for your reply. I worked with a Psychologist who provided me with a multitude of resources which I continue to practice everyday. I have undertaken every bit of advice on board that specific consultants have provided.
I understand, but this is an on-going process, a journey, in some cases a very long one. Acceptance means giving up hope for a short-term solution, and you have to do that in order to properly embark on that journey towards the long-term solution.
Hi there, I have suffered from varying types of pain since 2015 so it has been a long journey for me. I have to mobilise using crutches which has been ongoing for three years. I did have to take time off from work due to low mood however picked myself up again and work full time in social work despite being exhausted every day. If I didn’t have work it would be horrendous. I would just like some recognition of a condition - I know there is probably no cure however I seem to get blocked by every specialist as I don’t fit their criteria. That’s why I plan to go private as I have previously years ago and was told straight away what that particular issue was. Nicola
I'm sorry but I really don't believe you have a better chance of getting a diagnosis by going private. I did and it was sheer waste of money, in fact the treatment I got made the condition worse. The fact it worked out well for you before is no guide. But I wish you all the best whatever you do.
Chronic pain is different to acute pain. Some doctors communication levels leave a lot to be desired! A recent research article showed how it involves different parts of our brains, but this shouldn't be about being dismissed. Ongoing pain is debilitating. Having a diagnosis helps, and you have some idea of the cause of some of the pain you experience.
Pain management is about dealing with any physical causes as far as you can, alongside other techniques to help reduce the pain to manageable. Scotsman53 description of recognising there is no short-tem solution is helpful. I would suggest that you need to talk to your GP about managing your lack of sleep. Sleep is the time when our bodies repair and lack of good sleep long term can affect the whole of our body adversely.
Relaxation techniques, not 'pushing through pain', are important too. Ongoing phsyio exercises which don't cause you more pain will help to strengthen core muscles. If muscles become tight they can cause pain. It does take time to build good management into our daily lives. I have various health conditions including constant pain from spine (and sciatica), ME which prevents me going out most days, scar tissue damage, and a pain from a TVT mesh. I was fortunate to be referred to a Clinical Psychologist who dealt in long term health conditions and she helped me a lot, plus physiotherapist (one who dealt with long term conditions) and a Pain Management Course. I was off work sick for a long time and at an interview at the Job Centre the the lovely lady I saw (yes I know!!) suggested that I apply for disability benefit (now PIP). It helped me to recognise where my health was at. My GP has worked with me to prescribe sufficient pain medication. I take nortrypatline in the evening to help with sciatica pain, and help me sleep.
Your work sounds satisfying but probably stressful. While some stress is good, too much can exacerbate how we feel pain (heightens our response - a phsyiological response).
Acceptance, or even learning to live with pain, doesn't mean you can't improve your qualtity of life. Pain Management is about enjoying the best quality of life possible. I hope that you find all the help and support you need. It is difficult when you have several health conditions, which cross over specialisms.
There are so many conditions that doctors don't think about, because they think they are rare, when in fact in the population that has that set of symptoms they are not rare. One of those for instance is Ehlers-Danlos syndrome. On average it takes a couple of years for a man to get an accurate diagnosis of EDS, but for women the average time it takes is 10 years because so many clinicians still dismiss women in pain.
I hope eventually you find a compassionate clinician who will actually listen to you.
Thank you so much cyberbarn for your kind response. I just feel disheartened and that no one is listening to me apart from my GP - she is fantastic. Hope you are well.
Hi, has anyone suggested a Spinal Cord Stimulator? Not sure where you are in the UK but I know there’s a constant in London and one in Southampton on the NHS. Maybe your GP could refer you to one?
Hi Sunlover56, I just read about them last night. I am in Scotland however would travel anywhere in the UK to get the appropriate treatment. How strange that I was just talking to my parents about SCS last night. Thanks so much x
I’m sure there are Pain Management Doctors or Neurosurgeons in Scotland who can help, the usual route is through your GP then a specialist. I had a successful experience for 7 years until it went wrong and I’m now waiting for a replacement with a neurosurgeon as I have too much scar tissue for leads and need paddles. They are fantastic for the sort of pain you describe, not a cure but it gave me my life back and got me off all opiates. The waiting list is long, ask for a referral ASAP. I wish you the best and hope it works for you and at least some of your pain. Take care and don’t lose hope.
I definitely understand what your going through I developed psoriatic arthritis (Enthesitis) after losing my thyroid to cancer and its definitely been a rough existence for me even 7 years later …. I struggled to walk or stand and now my right shoulder is a hot mess can’t grip finger tips go numb and the pain just sucks the life right out of you ….. I have PSA pains from my toes to top of my head and every place in between it never stop even with treatment and I understand how doctors make us feel like this is as good as its going to get we just need to accept it …. Easy to say when your not the suffer…. I took matters into my own hands and I try every thing I can so far lidocaine patches have been helpful for my right shoulder/ arm at least they allow me to sleep and Ive used Tens Machine (helpful) and actually read someone else’s story about wearing the tens machine all day (I have not done this) …. Might be helpful to have a complete thyroid test done (FT3,FT4, T3, TSH and antibodies) and complete vitamin panel because believe it or not a bad thyroid can definitely cause crazy pains and so can low vitamins … lots of people here pay for their own labs because doctors won’t usually do the entire vitamin or thyroid panels that are needed.
Thank you so much for your reply Batty1, it has given me a lot to look into. As I said in one of my previous reply’s to someone, my friends results all came back “normal” however she was diagnosed with a very rare autoimmune disease. If it hadn’t been for her perseverance and one quality consultant she could have passed away during covid. Thank you again and I hope you are as well as possible xx
Hi Nicola, I feel for you because I also have been dismissed from specialists and the pain clinic, basically telling me that it was all in my head. Which I know it isn't? the pain like yours is very real and it makes me laugh when they try to tell you that you are not in any pain, very clever doctors can they feel your pain. NO THEY CAN'T! they dismiss us because they don't know what is wrong with us? They can't treat us this way but because they are the glorious NHS? they get away with it. As for your arm/hand I have this problem too and I was diagnosed with Tensynovitis a form of arthritis and Carpal Tunnel Syndrome, my grip and strength is very poor and I tend to drop things. My husband has to do all the carrying and heavy work and at work I have to wear splints on both my hands so that I can do my job properly. You shouldn't have to go private? you have the right to see a NHS specialist who knows what they are doing. I would contact your local PALS which is usually within the hospital. They should help you. In the past they have helped me with success. I hope this helps you in some small way. You are not alone, we all feel for you, take care of yourself and let us know how you get on? xx
Hi Imagine1, thank you so much for your kind words - it makes such a difference. I have been told it is all in my head by the last Pain Consultant I saw. Yeah I really want to be walking aided by two crutches that had to be adapted due to the strength and grip in my hand. I want to have excruciating pain over my body and exhausted everyday - but hey “it’s all in my head”. Thank you so much for the suggestion of PALS, I will look into this. I intend on making enquiries into the surgeon who undertook my second unsuccessful operation on my right shoulder as he was suspended just after this. He had removed another patients tendon in their hand instead of a nerve. Whilst he was suspended on sick pay, he continued to carry out these procedures at local private hospitals. He’s now back working with the NHS as he carried out remedial work. Hope you are well today and thanks again for understanding xx
No problem, I hope I helped you. That is disgusting how a surgeon can get away with what he has done? they think they are indestructable/God like, I don't think so. He should be struck off for good. Take care of yourself, thinking of you. xx
Hi Nicola, there is always something that you can do to improve your situation, so don't give up! Acceptance that there is something wrong, yes absolutely, acceptance meaning that nothing can be done - no chance. You may just need to become more actively involved in what has been done and what might be worth a try than you had expected. I went round the houses for 15 years of specialists and meds then started to do some reading for myself and have made considerable improvements over the last few years. What is screaming at me from your history is vitamin B12/folate deficiency, possibly a genetic one affecting methylation as that could also explain the medication sensitivity and also potentially higher pain sensations under stress. Stress of course also depletes vitamin and mineral levels. What did your grandmother have? And think about which meds you have been on and for how long, as some deplete nutrients heavily (eg gabapentin and B12 and folate (B9) and sertraline and B12). You say your GP is good, so should have checked serum B12 and serum folate - have you got results, if not I'd suggest you ask for copies of all your old ones so you can check what has been done and look for gaps. Do you take any vitamins or a multivitamin, as that could make the results harder to read and obscure a deficiency. I won't go into lots of detail, just to say serum B12 can be low, medium or high, and so can serum folate, and you can still have a cellular deficiency, so you need to gather information first and look for signs - in your full blood count, and family history as well as your own, as B12 metabolism is strongly genetic. Anyone having B12 injections or any history of Pernicious Anaemia or other autoimmune conditions? B12 deficiency has hugely wide raging symptoms including shooting and dull pains, sciatica (lack damages the myelin and makes nerve vulnerable), numbness, pins and needles, bladder weakness, horrendous fatigue etc etc (personal experience plus five generations of family). If testing hasn't been done you can do your own at home, so please have a think, make some notes, get copies of results and ask more questions. Pernicious Anaemia forum is a good place. Best wishes
Sorry to hear you are experiencing issues, unfortunately it happens. I would certainly get in touch with PALS (Patient Advice and Liaison Service) who can help navigate the NHS services and can talk to the NHS on your behalf. It doesn't mean the can necessarily get you that appointment but they can help you understand the response and identify any other avenues of NHS care that may he available. They helped me when I had to raise a concern (I had an accident whilst in hospital) and they helped my daughter when she was mis-diagnosed.
Hi Nicola. I too have had pretty much the same response. Is your Pain Clinic contracted out. Mine was Connect Health. I thought I was actually getting somewhere when I was seen by a ‘Senior Clinician’ at my local GP surgery in October 2022, twice, followed by two phone calls. Unfortunately, my surgery had not given her access to my medical records so both appointments were discussing and recording my medical history. She asked if I was willing to see a psychologist and I agreed. She did explain that there was a long waiting list and it would be possibly January 2023. Just before Christmas, I went online to order a repeat prescription and noticed a letter from Connect Health saying I’d been discharged from their service as I’d not been in contact for 28 days. I was also texted a message with a questionnaire to complete entitled ’Now Your Treatment Has Ended’. I was fuming, mainly because the letter to my GP was wrong and put the blame on me. (I’m sorry for the length of this reply but I know exactly where you’re coming from). I phoned the surgery asking it to be put on record that this was not the case (not really interested) and phoned CH who assured me they would send another letter to the surgery. This was all just before Christmas so as I was going to stay with my son for a few days, tried to forget about it until the New Year. Due to moving house, that was my 4th Pain Clinic since 2012 and one was stopped for a knee replacement and then for emergency surgery. In all that time I never got any further than breathing and pelvic floor exercises. When I was asked if anyone would ever examine me or do anything to help with my pain, I was told I was not taking it seriously and discharged. I’d been promised so much at the start. I can’t believe this service has been privatised. I’m now at the same stage as you. I have accepted that there is nothing anyone else can do. At least I’m seeing one specialist regularly, a rheumatologist, for my RA and Fibromyalgia. I also have a severely degenerative spine and rotational scoliosis, ME/CFS and Functional Neurological Disorder but no offers of any treatment. I get the feeling that doctors and consultants are so overwhelmed they are just sending us off to the Pain Clinic which is seen as a result and gets us out of their hair. I’m pursuing a clinical trial for medical cannabis now so wish me luck.
I honestly don’t know what specialist to suggest you see privately because I’ve just wasted money. Although I had a really bad headache that had lasted months was cured with one session of Bowen Technique. I don’t expect it to do anything for my back pain so look forward to being in a wheelchair for the rest of my life. I really hope you find something that works for your pain. Nic xx
Hi. I'm so sorry that you are going through all of this. I know, exactly, how you feel but unfortunately most medic's don't listen to us and didn't you know that women are neurotic? That wasn't a serious comment but it's what comes across from them. We have to fight for belief and treatment these day's but when people are in pain, it's so difficult to fight because we get so tired. Have you tried CBD Oil...from a Chemist though not online!! I would show your Pain Consultant or G.P. this forum because at some point medic's have to start listening. I was on Opioid painkiller 's which the NHS stopped abruptly, no warning and I'm now going through awful withdrawal. I have 2 fractured vertebrae but it took for me to ask for a DEXA Scan for them to find that and that I have Osteoporosis elsewhere and Osteoarthritis. I have Diverticulitis but it took a battle to get that diagnosis and also adhesions and a 10 cm hiatal hernia. They have now put me on Oramorph which I hate. Please keep fighting and keep in touch with us and let us know how you get on because we are all here for you. We know our own bodies and if I have another Consultant telling me that my pain is in my head, I will explode!
I have Fentanyl patches and I know that if I didn't have them then I would be in bed a lot more so maybe you could ask your G.P. about them. Please take care and we are here for you.
Thank you so much for you kind words Danni54, it’s very frustrating when you are in so much pain and not believed by medical professionals. With regards to your GP stopping an opioid medication abruptly should not happen (unless there are exceptional medical circumstances, such as the occurrence of serious side effects) - they should have put a reduction plan in place for you. I work in Social Work in the Drug and Alcohol Recovery Team therefore I see people going through withdrawals etc and it’s not pleasant. You should have a look at the NICE guidance with regards to this.
I have received a letter offering me a telephone appointment with the Pain Consultant who advised me by a previous letter I was discharged from their service - don’t understand the reasons for this so I will be calling the Clinic on Monday as I can’t take a call at the time they have offered due to work. It may be as a result of me requesting all my medical records - maybe not!! It’s all so confusing. I have an appointment with my GP soon so will be raising some issues with her as I have now found two lumps near my spine. It just seems like a vicious circle, I understand in a sense I have to accept my circumstances, but I have been on crutches for 3 years past January this year and my quality of life has been severely impacted.
I truly hope you are doing as well as possible. It’s so good to be able to chat to some people on here who understand the reason why I am so frustrated xx
I will look up the NICE Guidance. I should find it hard to believe that so many of us are being put through hell but there are far too many of us going to Dr.s, Consultant's and Pain Clinic medic's who do not have a clue what it's like to go through what we are all going through . I won't go into too much detail because it's in my profile but the worst time for me was when I was in pain and feeling incredibly ill for 2 year's. I had stomach scan's and Xray's and was sent to the Pain Clinic. I didn't know at the time but a tumour had shown on my right lung but nothing was done and nobody was told so I then went for 15 month's with Adenocarcinoma on my lung being told that there was nothing wrong until I had pneumonia. I was ambulanced into our hospital and the next day the Consultant came round and asked me why nothing had been done about my tumour. I told him that I didn't know that I had one ! After that thing's moved quite quickly and I had to have a Lobectomy. So ....please...if any patronising medic tells you that there is nothing wrong please keep fighting for a diagnosis. I was quite active before and loved my life but now I've been left with multiple problems and now this with the medication. Will stop moaning now! Please let us know how you get on. I was up half of the night with restless leg's and twitching and the pain has been bad today. Thank you for listening! I hope that your day hasn't been too bad Nic. Take care and please know that I'm thinking of you and wishing everybody on this forum all the best.
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