Hi I'm just after some advice. If anyone has a similar experience to me. Sorry my post is quite long. I've had neck and back pain for 18 months on a daily basis. An MRI showed I have bulged, slightly damaged discs at C7 and T4. I'm still really sore/in pain around T4 disc. I also now have flank pain, at waist.
My GP just gives me painkillers and sends me to physio team - they check out my flexibility which is very good, so they just give me a list of exercises, which I do, but the soreness and stiffness never goes away.
I walk and do yoga daily, also park run, and feel mostly ok when exercising, but when I sit, or stand still, I'm stiff, sore and achy, and just can't sit still.
I'm feeling frustrated: wondering if I'm going to be in pain, feeling like an old woman for the rest of my life.
When you go for physio, it's implied that if you do the exercises you'll get better. But I don't.!
An osteopath I saw privately said, he didn't think there was much wrong with my back, and he didn't understand why nothing he was doing was helping me.
My diet is good, I'm gluten free and 90% dairy free, to reduce any inflammation.
I'm just wanting to find out if there's anything else my GP should be doing for me? Any blood tests that should have been done to check if it's something other than osteoarthritis, although I've not actually been told I've got that. Thanks
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Your feelings in you posts brought back memories for me as I understand and suffered/suffer similarly. Unfortunately it’s been my experience that not much more can be done until you are ready to bite the bullet and have the fusion surgery needed to fix the disk. For me the first TKA at 36 years old was a had but necessary decision as the pain from the complete deterioration of my knee joint became so bad I was averaging 1/2 hours of sleep a night, exhausted all the time and found no enjoyment whatsoever in my life due to constant unrelenting pain that never stopped. Sure the surgery, okay maybe the rehab and recovery from such major surgery sucks but the pain relief is worth the procedure…at least it was for me. I’m so sorry you are in such a state and of course I’m not a doctor so what do I know really, but I’m 99% positive once you have the needed medical procedure to fix the spine issue and address the pain life will be much improved…my best to you in your journey to your best health!
Thanks for replying. I think what I'm frustrated about (as well as being in pain) is that I'm not getting the diagnosis or information I need. So I don't even know what my options are. Chances of getting prompt attention on NHS in UK is slim . I'm hoping by asking for others experiences I might be better equipped to ask GP/ physio the right questions, and push for what I need.
Being from the US I can’t understand the intricacies of your health system and as messed up as our is from my 4 years here on this site I have gleaned that the UK system makes ours look pristine…lol. I’m sorry about your frustrations and I understand them probably more then you know as I’ve been there/still am there as I have decided the 17/18 surgeries (from minor to a joint replacement) are enough maybe for the remainder of my life unless I have an emergent medical necessity forcing additional surgery, as total joint replacements are all the choice I have left at my advanced stage of multi-joint OA. I’ve accepted the constant moderate pain is a permanent part of my life until I breathe my last and that’s okay for me…sometimes (like the last couple of days) it’s much worse and still disrupts my life as I did not sleep at all last night. Pain and the cramping I have as a result of my condition causes my sleeplessness which now leads to way too much overthinking and “what if” scenarios…Yet I’ve accepted that both the pain and occasional life disruptions are my life now at age 58. As much as I hate to even SAY IT I’m no longer a young man I am instead a man, who is entering the autumn of life that has an expiration date regardless of how much I try to deny it…lol! Finally, not trying to be negative Ned but it’s been my experience that you won’t ever feel like you are getting the information or diagnosis you want or need…most docs only listen to about half of what we say and unless you’ve been a patient for a long time probably only receive half her/his attention when they are in the room with you…our system they gotta see 50/60 patients a day, yours sounds worse. So I’d do what most here have done, self-educate until you know as much or more then any of your doctors about your disease/affliction, then ask pointed questions of doc, nurses etc in the office using the medical jargon as they do to spark some attention, or at least get noticed. NO ONE cares more about your health then you do , no one so arm yourself with education and knowledge…sites like Mayo Clinic, Johns Hopkins, and Harvard med. several others, I’ll research some UK sites and try to get back in a timely manner, meanwhile as always my best to you!
Thanks for your advice. I am realising that I have to do my research. That's a lot of surgeries you've had 😬. Best wishes for an improvement in your pain.
I’ve had neck and shoulder pain for years, over 13 years to be precise. I’ve visited numerous GPs over that period, along with pain management (waste of time) in my opinion. On one visit we were asked to Sit down, close our eyes while the therapist read us a story. It was reminiscent of what was called the baby class in school, where the teacher had us sit around her as she read out a story. GPs where less than useless, much like yourself, all they offered was Gabapentin, which one GP, who was retiring at the time said to me, whatever you do, do not let them give you Gabapentin it’s a very dangerous drug. Another Younger GP said to me, after I turned down his offer of Gabapentin said to me, then you’re between a rock and a hard place. As for physiotherapy, I call it talk o therapy, because as over the 13 years I have tried, all they do is talk to me, with no physical treatment at all. I’ve not tried since the beginning of lock down, as I feel it’s a complete waste of time and effort on my behalf. As the last one I visited used to always round off by saying, my uncle had a new car it ran perfectly, it’s now an old car that still runs but not as well as it used too. I wish you luck in your endeavour to find a solution to your pain, but after over 13 years of contacting GPs and physiotherapist (NHS) then you are on a hiding to nothing, as no one seems to care these days, that’s Unless you accept the numerous pain killers they want you to take.
Thirteen years is a long time to be in pain! So sorry, that's hard. I'm also finding NHS doesn't seem to be much help. Trouble is, if you go private there's no guarantee either. People just want to take your money and don't care if they don't help you. I tried acupuncture, and an osteopath, neither helped the pain. I've not been offered gabapentin , only paracetamol plus codeine, I take them as little as possible. Thanks for your reply, I hope things improve for you.
You don't say what blood tests you have had done by GP which could give an indication. Ask for a crp, esp, thyroid and Rheumatoid arthritis blood test. Spinal surgery should be the absolute last resort.
I've had CRP and ESR tested, both low. I was diagnosed hypothyroid two years ago, and kept undermedicated by GP for ages 🙄. I do actually feel that low thyroid levels could have been a factor, leading to my problems now, as it can cause muscle weakness. Having to sort out my own thyroid meds now, purchasing own liothyronine T3. Still trying to get optimal. Really not much faith in GP at all. I think I was tested for RA but not recently. Thanks for replying.
Thank you, you are right regarding private, I’ve tried both chiropractor and physiotherapy privately but as you say they appear to only want you to carry on with treatment for as long as they wish. Both GPs and the NHS seem reluctant to offer treatment these days.
hi, sorry to hear your in pain. May I suggest you get an MCATTs referral they are the ones who ordered the imaging, blood tests and physio and hydro-physio. I went this route and they found I have bone spurs growing out of my spine and told me I had arthritis. One year later a gp that I trusted told me it was osteoarthritis which I have pain ever waking moment, but I also suffer with abdominal and chest pain 24/7 . I was on pain patches (30mcg) but am being taken off these as the neurologist has said it’s killing me . The pain meds just took the edge off these as pain which has now come back with a vengeance. Also advise you get a pain clinic referral this can take time as I found out but did not help me. I hope you find what you need soon. Kevin
Thanks for your reply. I was referred to the Musculoskeletal team last year, but didn't get much help. My appointment then, just consisted of a few quick questions, a very brief examination of my range of movement and then just sent some exercises by email!I was referred again in October for new area of pain. Had to wait two months for initial appointment - then told I could go on a 5 week course called "Back to action" . I'm waiting to start that. I think it will involve some physio help and understanding of pain. It's all taking such a long time on NHS, and it is hard living in pain, and not knowing if anything will actually improve. I do realise I might be stuck with it. Re- pain relief, it's difficult because you have to have some, but you know it's damaging your body. 😬. I've been using a heated jacket in the evenings, which gives me some relief.
I use pain control 24/7 out of interest why do you think it's damaging your body? Your body is better if it's not in pain.
I've got a friend she's just had her 100 birthday and she's been on morphine for nearly 40 years with no problems caused by the morphine, she's got OA which is why she's on morphine.
An old friend who was a Dr told me years ago that the body shouldn't be left in pain and if the drugs were needed the body utilises it so it doesn't cause harm.
The harm happens when you take it and don't need it.
I just thought it might help, I feel awful when I'm in pain, it takes over my being, but if I take the drugs it's manageable and I can do much more.
For me it was the mix of Oxycodone and Duloxetine that was the magic bullet, not pain free but can function
I hope you can find somebody to help you, personally I've found the pain clinic excellent but no doubt it differs between hospitals!!
I've decided to take a rest for a few weeks. My pain is when I'm sitting or standing still. Which is hard when I'm working. It helps to move all the time, otherwise I'm sore stiff and achy. I have to lie down to watch TV. Strange I know.
Good point, I agree, it's not good for our bodies to be in pain, and its also bad for mental health. I haven't researched it, and have made an assumption perhaps. I thought it would maybe damage my liver long term . My AST liver enzyme test had gone up to top of the range since taking a lot of painkillers, and GP said I couldn't stay on Cocodemol. Now on paracetamol plus codeine, but told not to add much codeine. So I take it as little as possible. I wouldn't know which painkillers were the safest. Thanks for replying.
another angle for ,your Walking and exercise, running etc
Rings bells with myself ,
That could maybe be contributing a lot of issiues ,
Strict pacing is crucial etc to reduce your sympotoms
I'm suprised if the the doc and physio has not mentioned this ,and if they know the level of fitness you do ,
As mentioned above as pain clinic may help ,but I'd thing they say the same about the level of fitness you do ,
A wellbeing courses or pain course may help ,referal from gp or physio or pain clinic,
May not be wot you want to hear, I'd stop or do low level exercise, or short walk only for a month or 2 to see if it helps and has been contributing to the pain and soreness,
Just another angle ,
Was advised this and everyone on the courses etc over the years ,pacing is crucial
Thanks for the advice. No-one has told me this, I did tell them about my level of activity. In fact at my last physio appointment I was told to exercise as much as I wanted to . Perhaps I should try reducing, sad because I like exercising. I am waiting to start a 5 week Back to action course. I'm hoping I'll get some better help and advice.
throughout my life I have taken part in many sports, being a judo black belt, who did lots of cross country running, cycling scuba diving and many more. I walk each and every day. Where I agree with you that certain exercises are very beneficial. The problem starts simply because other than medication, GPs seem not to want to help.
Hi again, my hubby had that book on kindle. I've just finished reading it, and feel that it's certainly possible that I have neuroplastic pain. It's a great book. I'm going to work on all his suggestions, also I found out from the book's website that there is a practitioner fairly close to me, if I need some extra help. Thanks again for suggesting it 🤞
I am just wondering how good your flexibility is? As in, are you hypermobile? My son and I have a connective tissue disorder that causes us to be hypermobile, and for people with this condition the exercises have to be a bit different. He went through the whole exercise thing with physio and his comment was well, I am better at doing those exercises, but it hasn't changed anything!
When I last went to an NHS physio she told me there was nothing wrong with my hands because I had good mobility, so it must be fibro. I knew I didn't meet the requirements for fibro. I asked if the big lumps on my normally slim fingers were swollen joints, or osteophytes (bone spurs). She said they couldn't possibly be bone spurs, my range of movement is fine.
So I asked her to look at the most recent x-rays. Oh she says, yes, they are osteophytes! But she clearly didn't like being shown up as she immediately dismissed me.
My rheumatologist does the same thing. Thinks my psoriatic arthritis is mild because I can bend over. I have given up pointing out that I can't bend over and touch the ground anymore, so my mobility has decreased!
I agree with others that it might be too much exercise. The exercise could be causing inflammation, and there is also evidence that, if you are hypermobile, that people with hypermobile joints often get osteoarthritis at a younger age.
So the sort of exercise that can help is getting your muscles stronger, rather than doing things like running. Gentle weights are good, and isometric exercises.
Thanks for your reply. I am quite flexible, I've done yoga for years and I would have thought my core muscles were fairly strong. I don't know if I could be hypermobile 🤔 I have hypothyroidism, which is associated with muscle weakness, and also hyper mobility. How would I find out if I had that? I only have pain in my back/ not my arms or legs.It is annoying when you're trying to get to the bottom of something and the "experts" don't seem to know their job , or resent the fact that you've done some research yourself and want some answers!
I think you're right and I need to slow down a bit., and find out the right sort of exercise. Thanks again
With reference your post, I have taken pills for many years for pain , have a family with similar joint pains and distortions. As a member of arthritis action for many years and a volunteerwe have found one of the best options is little and often exercise and definately pace yourself . no Gp can advise on individual pacing only you can sort that with trial and error. Hope after a bit of trial & error with pills, exercise and even ice & heat pads you may get a little better.
Thanks for the advice. I do enjoy exercise, but I have been trying to strengthen myself, thinking it would help if my muscles were stronger it would help my back. Probably best if I cut down, from what most of you are saying.
but I found that returning to a moderate level of consistent exercise at least 4/5 days a week led to a significant improvement in my overall wellbeing. Since COVID and just (I’m guessing) due to now almost 30 years of sub 20 eGFR at 58 years old I can’t seem to muster the energy to meet the 4/5 days a week exercise routine. Other life issues affect my ability to exercise as well most likely and probably the most limiting is needing a wheelchair just to move around at home. Further the lack of motion leads to further inability to move as well since skipping multiple days of moderate exercise can lead (at my age anyway as opposed to say a man aged 40 or so) quickly to muscle atrophy and further loss of strength and mobility. Its something that frustrates me almost daily and even when I will myself to push through the pain and inconvenience of using a wheelchair, go to the gym and maintain that consistently for a couple of weeks, life gets in the way and something causes me to miss 3/4 days of work and I’m back to square one…Internally I know it’s part of the aging process but that doesn’t make it any less frustrating or help with overall wellbeing being. Just a couple of random thoughts, you’ve gotten through the hard part of getting in good shape, I’d try to not lose that especially knowing how much work it takes to maintain that level of fitness. I’m a typical male I guess and I have a hard time accepting that maybe I’ll never be back in the kind of physical shape I want or feel I need to be in to feel my best physically. Couple that with the realization that I’m now right up against being labeled an “old man” and that’s what causes my depression on days where I don’t feel like even getting out of bed. Life is always about what we make of it and as I close in on 60 it is clearer everyday that getting old really stinks! As always I wish you the best on your journey to your good health!
Thanks. I agree, It's hard when you've enjoyed doing something, and then find you can't do it anymore. Being fit does feel good, it helps with every aspect of your physical and mental health, that's why I run, partly because I feel great after, but I think I'll have to give it up for a while. Re your last sentiment, yes it does seem like " getting old stinks" it certainly is hard to accept .
As Carnac would say to his sidekick, “you are correct, sir,” (or ma’am as I am assuming is the case here…I hope I’m correct..lol!). Apparently I was having a weak moment when I replied as I’m usually more upbeat then that, as we all do. I appreciate your reply and as always my best to your in your journey to your best health!
I came across that while googling stuff. I did have Crp and ESR blood tests which were low in range, and also full blood count was normal. The GP didn't mention it to me but I presume they ruled it out. I'm not sure if they'd refer me to rheumatologist with normal blood tests. 🤔 I don't have any swelling of joints. Do you know - what could a rheumatologist do if it is osteoarthritis? Thanks for replying.
Hi thanks. No I haven't tried gabapentin. They've given me paracetamol with codeine which isn't that helpful. I'll have a think about seeing a rheumatologist. I probably could pay privately, although I've already had to pay to see an endocrinologist ( who overruled my GP). I've been booked on an NHS 5 week Back to action course". I might be able to ask some advice there, but if I there's no improvement, I will see a rheumatologist. I've lost faith in GPs, the ones I've seen seem so unwilling to help, other than in a very basic way, or think outside the box.
Exercise can be very beneficial, no doubt and when I was your age I was very active.
Now I am 75yrs and obviously have changed my life after 12 years of chronic pain.
Be careful with the RUNNING…. this can be very hard on your joints and it may bring more problems later on.
I have found that anti inflammatory foods are helpful; my DB makes homemade veggie soup with lots of garlic which we have daily, without fail. Unless you have been tested for gluten allergy cutting it out is not necessarily going to help. I’m also only using pure organic olive oil in foods and as much raw stuff and nuts as possible.
I recently started a course of Magnesium Glycinate to help with nerve pain…
I have Occipital/Trigeminal Neuralgia and now Pudendal neuralgia too all right sided .
I try to remain positive:it’s hard but experience has taught me that there are NO definitive answers for us… we just have to keep going … I wish you a happy new year and send all good wishes.
Any advice is welcome. Thanks for taking the time to reply. So I have decided to stop running for a while, bit disappointed but no point taking risks. I have been vegetarian, (sometimes eating raw veggies) for a long time, apart from eating a little fish sometimes. Your soups sound delicious. I haven't been cooking as much myself, as I just haven't felt like it. Now is the time of year for soups, and they are easy to make, I'll stock up on veggies, and try some.Regarding gluten, I'm avoiding it because I have auto immune thyroid disease and quite a few people say auto immune people should avoid gluten. If it possibly might prevent me developing other auto immune diseases in the future (as is quite common) then I'll happily give it up. We often have no idea why we get these things.
I take magnesium too, to help with sleep, relaxation and muscle pain .
Sorry to hear about your neuralgia, that must be difficult for you. Thanks again and I hope the New year brings us both some better times. Best wishes.
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Asking on behalf of Dad - 75 years old, bad pain in neck due to 'wear & tear' - doc says nothing more can be done
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