Happy New Year everyone. Haven’t written for ages. Briefly, l am nearly 80 and have had PMR and GCA for six years and am on 5mgs Pred. Since August l find l am suffering more and more lower back pain and pains in back of both legs, like a bad cramp really. So mobility is becoming very painful and difficult. At first my GP thought it was sciatica but then decided l needed to see a consultant, however the waiting list in my area is 24 months, just for a face to face.
I decided to dig into my savings and go to see someone privately, a Nuffield consultant. He was very nice and extremely thorough and told me l have a soft spine, probably due to steroids, and would need an op to remove a bit of spine that had slipped and was pressing on nerves. He wants to operate and can do so in 4 weeks time but the bill will be £10,880. This l cannot afford so he will put me on his waiting list of up to 2 years. There is no way l can cope with this pain and lack of mobility for that length of time so l asked about spinal injections. He was not keen at all and said they don’t really work. Well, l am very keen to have a go. Has anyone else tried them please .Would love to hear . Many thank you’s
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What a distressing position to be in and sadly, all too common. How did he diagnose this “soft spine” that has slipped? Have you had any sort of imaging for example? Have you ever had a DEXA scan for bone density?
Yes l have had a lot of tests including a Dexa which he said was “pretty good” Also had MRI, 3 CT scans and 2 X-rays..
All came back with quote” not too bad, and fixable” which is pretty good l suppose but none of those answers take away my pain. I am virtually living on hot water bottles and paracetamols, can’t take NSAIDs for obvious reasons.l am supposed to be exercising to build up my muscle strength for this op but how can l when the max number of steps l can take is 30 before l have to sit down.
That’s good! Don’t think I’d want to contemplate spinal surgery without something! Like PMRPro says, a soft spine doesn’t quite match up with a pretty good DEXA.
Bit of a catch 22 situation isn't it. I have to say - I would want a second opinion before agreeing to spinal surgery. And frankly - not sure how he reconciles a statement the dexa is pretty good with "soft spine due to pred".
However - I may be wrong but I suspect what he may mean is you have spondylolisthesis though why they have to put things in noddy language is always beyond me.
The treatment is to fuse the vertebrae that are slipping over each other. I honestly don't think spinal injections would help.
What you probably need to build up stregth is hydrotherapy - you will probably be able to move in the pool because there is no weight on the damaged area.
Now you have an opinion, you need to discuss this in detail with your GP. Though as you know - waiting lists in the UK are pretty dire.
Thank you PMRpro for your opinion which l value very much. When l read what you had to say it rang a bell with the word “spondy” something. I seem to remember the consultant said like that along with the words Grade one but, he said so many things ! All l do know is that he wanted to operate ( with full general anaesthetic) and that there was a 20% chance of failure. I am not exactly inspired to go ahead, basically all l ask of him is some form of pain relief so l can get on with life. I do like your suggestion of hydrotherapy and will try it out as soon as possible. Thank you
suggest you see your GP, there are other forms of pain relief. I have a benign spinal haemangioma & bursitis & sciatica…& know a lot of pain! Time release Tramadol worked for me for a number of years, but then not at all. I’m trialling pain patches right now. The low startup dosage was there to see if I had bad side effects, but none I couldn’t handle, so the dosage was doubled & I found the first real pain relief in 15 years (along with minor side effects). I am lucky & have an excellent GP, but you can also get referred to a pain clinic, or pay privately to see a consultant at a Pain Clinic, perhaps?
Thank you Pixix, l had no idea there were so many different types of pain relief. I am booked to see my GP next Tuesday so l can ask him about these. The pain patches sound perfect, the pain clinic not so much. Various friends have been to the one at our York Hospital and have come back with pretty negative reports so l will probably put it at the bottom of my list. I know l can’t take NSAIDs due to the Prednisolone and Cocodamol is ok but my stomach didn’t approve! So l am reduced to 8 Paracetamol per day and numerous hot water bottles. Your suggestions have showed me a light at the end of a dark tunnel, so thank you so much again.
My rheumy is happy with a low dose of ibuprofen PROVIDING I also take a PPI which i don't normally. But as I said to him the other day - not sure I want to live for years more with the level of pain and the limitations I have a lot of the time! I can get a reasonable level of pain relief with a single dose of ibuprofen and that allows me to get moving and the movement also helps. Interestingly, I get far more help from him than I do from our Pain Clinic which is usually excellent because she just says no because of long term effects on cardiovascular system and kidneys without offering a reasonable alternative. She isn't looking for a balance to improve my quality of life. The pain patches here are very regulated for reimbursement - so she says no despite them working well. If you have access to them i n the UK, do try them.
I can’t take NSAIDs at all. My stomach won’t allow me to take many things! I went to a pain clinic once. I’d put on 2 stone due to steroids. He looked at me, said you’re too fat to take any painkillers I have, goodbye! I was in there 3 minutes. But they can’t all be like that, & the handling of pain is their sole job!! But I’m interested to hear other people didn’t do well, either. Oh yes, Google pain relief…there’s a world of available items! Some, like amitryptylline are old fashioned anti depressants, but they found that if taken at a completely different dosage they are excellent muscle relaxants, & can help pain that way! Good luck! S x
l have been bluntly told by GP and pharmacists do NOT take ibuprofen. It’s such a shame really because before PMR they were my number one painkiller. Now l have to put up with para’s which only barely touch the surface. Can’t wait for Tuesday and my face to face with my GP ! Thank you for your suggestions.
I also have a pain doctor who says no ibuprofen. Paracetamol is pretty much a waste of space. A long in-depth discussion with my rheumatologist resulted in understanding and empathy - and a decision that the balance was that a low dose of ibuprofen that worked plus a PPI was preferable to paracetamol that left me still in pain and limited in what I can do, not least because my renal function is perfect so a very low dose was unlikely to result in anything dramatic there.
As he says, it is all a balance and while ideally you wouldn't use ibuprofen - if the result is you are constantly in pain and severely limited in your quality of life, something has to give. In the longer term, he is also willing to give me the steroid injection the pain doctor also refuses to give, He has done it before under similar circumstances and it was fine. I trust him - hopefully I'm right but continuing like this is no future.
I do hope l can get my GP to be as understanding and helpful as your a rheumy is. Like you say, it all boils down to quality of life, and at the moment mine is virtually nil. I try hard not to feel sorry for myself but this past 12 months have been hard, what with losing my husband, then learning to live on my own and start life again and now this ….. whatever “this” is. Hey ho, it could be a lot worse l know. Just so thankful l have this wonderful forum l can off load to. Thank you for all your help.
The loss of your husband possibly hasn't helped - it was well after mine died that this all started and hasn't really been dealt with properly and I do think it is all linked. Living on my own hasn't been a problem - but the pain and disability is getting to the stage where it is difficult when you are responsible for everything - even if it had been like that for a few years for me.
I read all the time about NSAIDS and their side effects on the stomach and not being compatible with pred. No one has ever mentioned Voltarin or Naproxen suppositories. I’m unable to take NSAIDS orally because of Barrette’s so ai asked my doctor if there were suppositories available. She looked and said there were.
I’ve been taking them for years. One every 24 hours when necessary for pain. They are magic. So many people suffer unnecessarily because of the ick factor when using suppositories. It’s a mystery to me. I’m in Australia but I should imagine they’re available in other countries.
Suppositories are very rarely used in the UK - the ick factor I suspect. Used loads over here in mainland Europe. But the point is they are absorbed into the blood stream and a lot of doctors think most of the longterm effects are related to their presence in the body - not just the gut irritation so while it helps with the Barrett's problem, the longterm adverse systemic effects remain.
Good evening sumojo. A very interesting comment, thank you. I will definitely bring this subject up with my GP. I have always connected suppositories with “female and bottom” problems, l really must connect with the 21st century. Thank you again.
The first time my PMR struck big time and I couldn't even get out of bed, my husband called the GP for a home visit, He prescribed Voltarol suppositories. OH refused to administer one - and I was physically incapable of doing it.
Hope my GP doesn’t prescribe anything like that, l would be in an awful situation seeing as l no longer have an OH and even if l had l very much doubt if he would help out either. Men of a certain era l suppose !
Probably be a 2 week wait. My Gp told me on my last appointment that the NHS has had it, totally washed up and to go private if l could afford it. He now works only 3 days per week. He’s a very nice man, mid forties and saved my life 7 years ago by a quick and accurate diagnosis. I now have to wait upto 3 weeks to see him, 7 years ago it was 24 hours.
I live in northern Italy, My husband died 2 years ago and a bit of me knows I will have to consider moving back to the UK at some point as both my daughters work in the NHS. But I can see my GP same day - turn up and wait, if you are in the door, you will be seen. I have an amazing rheumatologist and am on medication I can't have in the UK. It is all free at point of delivery just like the UK and it is paid by the Italian state. The weather is better, public transport here works perfectly and the food and people are great. I'm not ready to leave yet.
Sounds as if you have no reason to return other than family course. Having daughters involved in NHS must give you an insight in what’s going on there. We emigrated to Australia fifty years ago and now I’m so pleased we live here. I can get a doctors appointment the same day or at least the next. I see the same doctor every time. Although we do have private health it’s not always necessary to use it in the hospital system. My husband has had treatment for his prostate, no charge on the public system and several skin cancer surgeries by a plastic surgeon last year again no charge. We certainly live in the Lucky Country here. Good medical care becomes the most important thing when getting older.
Couldn't agree more. Having a doctor and hospital handy was a priority on the list when we were looking for this flat - together with shop, pharmacy and affordable restaurant (3) within walking distance, I still have a bank and even if there weren't one in the village there are umpteen at the other end of the short bus ride into town, the train goes from the village to the back door of the hospital, But realistically - there may come a point where I can't care for myself entirely on my own. Though I suspect a decent carehome here costs less than in the UK! If I could pick the flat and the village up and transport it to the UK it would be perfect - other than the appalling weather!
yes spinal injections work for a while. then they don’t. I was up for my 3 rd. when I decided to discuss issue with my gp. I really did not want another injection. she gave it careful thought and asked if i wanted to try DULOXETINE. It has been used successfully for pain management, though not its original purpose. In layman’s terms it turns off the circuitry from source of pain to the brain ( which is where all pain is registered) . I said I would try, nothing to lose. And I would know within two weeks of use ( not the usual 4-6 weeks routine). Well it worked for me within 3 days. I was at lowest dose , 30 mg. And i stayed there for about 2 years. Just recently i increased to 60 as pain was returning ( back, legs) .That has done the trick. Is it perfect?…no….some discomfort with certain moves but I am very satisfied. .
Talk to your doctor about this drug. You’ll know quickly whether it will work for you or not.
Wow, never heard of this one. Will definitely mention it to my GP. I am willing to try anything. I’m not expecting 100% pain relief but l will settle for 50%. All l want is my mobility back again so l can strengthen my muscles and be able to walk more than 30 steps without being in awful pain. I have pretty much been slumped in my armchair or curled up in bed for the past 5 months. They are the only 2 places where I am not in pain. So thank you very much icu2 for your recommendation. Fingers crossed my GP will oblige.
i sought gp input knowing i was going on a plane ( 5 hours on , 2 waiting then another 2 minimum.). after that a 2 day car drive. just needed to be able to get to destination, in and out of seats, walking thro terminals etc. Once at my destination i could just lie in bed, like you , and be ok.
i just needed to get there with minimal pain and did not want opioids.
if gp tells you duloxetine is for depression, don’t let that put you off. check internet sites duloxetine for PAIN.
you try it , you see if it works. what’s two weeks out of your life?
My sentiments exactly. I will definitely give it a try if possible. I have big plans for my 80th in July which includes flights etc so, like you, l need something to get me there . Fingers crossed 🤞
I’m not being negative, please do try duLoxetine…sadly it made me physically sick, & after 3 days of not keeping any food down I gave it up. Another drug that used to be for depression is amitryptylline, they found that, at a different strength, it was a good muscle relaxant. I take it about 7pm & it helps me to drop off to sleep. But I’ve had four car crashes (none my fault) & injured each time. Plus I have 11 active medical issues/diseases, which is why I’ve tried a lot of different tablets. I worked in a pharma lab environment for 20 years, too, & learnt a bit! It takes a while each time I get a new doctor for them to get used to me…& my medical stuff! I can only fly short distances now, travel insurance for just one proposed trip of two weeks to USA was £4,000. Hope you find some help, S x
I too am due in have extensive spinal canal surgery hopefully next month, I have been given Voltarol Diclofenic 50mg Suppositories they have been brilliant. I use one at11pm and this enables me to get out of bed in the morning without the horrendous pain, I am also on Morphine Patches 10mg and Gabapentin 100mgs but the Diclofenic is the real game changer.
Thank you for your suggestions for pain relief. Have not tried the suppositories, will mention them to my GP on Tuesday, however , can’t take Gabapentin, it doesn’t agree with me at all and doesn’t work for pain relief with me. Do hope all goes well with your op. I’ve got many months to wait for mine, unless l pay nearly £11,000 and go private! Thank you for your help
The problem with spinal injections is that the effect lasts for a maximum of three months. Repeat injections tend to be less effective. They can be painful too. I had a spinal decompression in September 2018 at L5 and S1. It did help with my leg pain but not so much with my back. I do have severe scoliosis though, which doesn’t help. At present I use Lidocaine pain patches for special occasions, Tiger Balm (the white one) and Hemp Active Gel. My advice is to avoid surgery and injections if you possibly can. Acupuncture can help but be sure to find a Chinese practitioner, backintelligence.com is very informative and a specialist physiotherapist excellent. A hot bath is my absolute saviour but I don’t know whether you can manage a bath. I do hope this helps!
Thank you for your suggestions. My problem apparently is in L4 and L5 and is Grade 1 spondylolisthesis or some name like that. My consultant said it was a couple of bones have pushed together and are pressing on nerves, whatever it is it is seriously painful. I have noted what you have said about injections and will give it a lot of thought, thank you. I have had a lot of acupuncture but it’s not really helped a lot. I know what you mean about a hot bath, thank goodness l can still manage one. For me really the only thing that really works is warmth and hot water bottles, but Tiger balm and other such creams don’t have the same effect somehow. I will have a look at back intelligence.com thank you.
may I ask what kinds of pictures did he take of your spine? I’ve had two back surgeries now because the spacers they put in failed and one slipped off. Now I have four fusions in my lower back. The longer you wait to get some help the worse it may become. I would get a second opinion. Good luck to you. I know your pain.
I have had 2 MRIs one being taken less than a month ago which showed decompression on L4 and L5 grade one. In late November l had 3 CT scans and 2 spinal X-rays but l don’t know the results of those tests unfortunately. Thank you l will take your advice and seek a second opinion. I hope your back pain has been relieved by your operations.
I have been in your position. I was put on NHS waiting list in June 2022 to see a neurosurgeon. I was told it could take in excess of 2 years!
Luckily, I have private medical insurance and because the problem was a new back issue and unrelated to my other back issues they agreed to fund it.
I saw a Neurosurgeon who was excellent. He ordered nerve conduction tests to see what spinal nerves were being affected as my MRI showed several possible troublesome areas.
Following the nerve conduction tests I was told that I have some permanent nerve damage but there were 4 areas where my spinal nerves were being crushed by prolapses and bone growths.
My surgeon and Rheumatologist said that injections would not help. My only option for relief was decompression surgery. By this time (Feb 22) I could not walk and in constant pain down one leg and part of the other leg.
So I decided to go ahead and had bilateral lumbar decompression of L3/L4 . I was warned that there was a chance it wouldn't work and also that I would still be in pain from other areas of my spine. He said he could only do one area at a time so as L3L4 looked the worst that's what was done with an option to do the other disc if necessary.
I had my surgery in the Springtime, May 2023. The result was instant. I got feeling back in my left leg and the debilitating sciatic pain was gone. I did everything I was told to do and made a good recovery. I still get some leg pain but it's only when I do a lot of walking. I do get backpain too but all of the excruciating pain has gone.
I was also having trouble with constantly feeling I needed to wee. That has cleared up now and the doctors think that was a symptom of the cauda equina nerve bundle being squashed.
I saw all my bills from the hospital and I would say it wasn't far off £9500. I was only in for one night. So I don't think your quote is unreasonable but I certainly couldn't have afforded to fund that myself!
I did have a call in December 23 from NHS asking if I still needed to see a Neurosurgeon. I asked them if they had appointments and they said no they were just checking that people on the waiting list needed to still be on there! They could not give me any idea when I might be able to see someone. So I told them to take me off the list as I had had the surgery. So I know the NHS lists are huge.
I have a good Rheumatologist who looks after my PMR and other arthritis. I take NSAIDs when I need them and have daily slow release painkillers as well as my 5mg of daily prednisolone.
I think you need to have a good chat with your GP about pain relief as there's plenty of pain meds to try. I really feel for you as I know how bad the pain can be and how demoralising it is to be told that there's a long wait for treatment. I do hope you get something sorted. I don't think I would be spending money on injections. This can be done under NHS if your GP refers you and you want to try it. I do however think that sorting out a good pain relief regimen would be better though since you will have to wait for a while.
Thank you S4andy for your very encouraging information.Part of your text sounded just like my problem and l now have a lot of thinking to do. Unfortunately l do not have private insurance so l am trying to find the best pain relief l can get on the NHS until my name comes to the top of the operation list ! You have made many good suggestions and lots of useful information so thank you very much. I will definitely have a long talk with my GP on Tuesday !
I get epidural spinal injections every 5 months to kill the nerve pain from bone spurs in the spine that press the nerves. They work great for me, thank goodness..and I even had 2-level cervical spinal fusion- and now still have to get the injections.
Thank you for your reply sidra1968 and details about your epidurals. A couple of my friends have had them and give good reports, like yourself. I will look into this and see if they are suitable for me, fingers crossed.
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