As explained in previous posts I have two spinal fractures from X-ray January. Pain still bad and osteoporosis nurse pressed me to get stronger painkillers. Last week GP gave me 30mg codeine, taking with paracetamol but only slightly improved things. Pain is unpredictable, suddenly excruciating, shooting all around the usual site, right waist, but stabs into tummy and skin is v tender to touch. Looking on ROS site, it fits description of neuropathy. Would be so grateful for people’s experience of this and how to manage and treat?
is this neuropathy?: As explained in previous posts... - PMRGCAuk
is this neuropathy?
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Japsquar
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If it might be that, you need a referral to an expert, that is too specialised for GPs to deal with. However - if you have 2 spinal fractures, which vertebrae are involved? Are they close to the nerves leaving the spinal cord that supply those regions where you feel the pain?
T9 and L3 so I imagine L3 would be the relevant one, which the osteoporosis nurse thought had become squished. What would be the title of such an expert?
A orthopaedic spinal specialist I'd think - there may be something going on around that fracture that isn't stable or the disc is pressing on the nerves.
You’re probably right but I imagine that will take weeks if not months and meanwhile am finding it hard to live with the pain plus the vicious circle of not being able to walk and legs raring to go but wasting away!
If it is very disabling - make a fuss. They do still take emergencies because nerves under pressure from discs can have pretty nasty results and dealing with it sooner rather than later helps. He who demands loudest ...
You sound like my son who is always telling me to make more fuss! I guess you are both right.
We are - because it is assumed if you don't say much that you are OK so you have to make it clear when you aren't. I'm guilty too - I persevered with the pain clinic approach until I realised it amount to saying no to everything I found worked! Rightly enough for a few things but that didn't help me. So I made it clear at a rheumy appointment just how disbaled and restricted I was because of the pain from sacroiliac joint inflammation. The Pain Clinic wouldn't do a steroid injection because I am on anticoagulant medication and I might bleed. The rheumy was prepared to do a very careful one with ultrasound guidance. And at last that was the end of nearly 2 years of unremitting pain. Now there is 2 years of loss of condition to catch up - probably not going to happen at my age. If I'd made a fuss earlier ...
What a story, sounds like two years of hell, plus consequences as you say. Won’t catch up at my age either. Used to feel (and be taken for) 10 years younger, not any more! Will start on GP tomorrow and also email Rheumy. Have noticed she cottons onto anything I say is better - usually meaning today only - and records it in her follow up letter as if it’s better forever!
Hi Japsquar, I also have fractures in my spine and pelvis. After a dexa scan it was found I too have severe osteoporosis which we suspect was caused by the steroids, because I wasn't prescribed Alendronic acid from the beginning of treatment for PMR. I am now on a new drug called Evenity instead of AA. I also have to take Amitriptyline for Neuropathy. My neuropathy affects me by giving me burning sensations in my feet at night which wakes me up. I don't have the sensations you describe. I too find that I can't find a painkiller to help with fracture pain. Thought I'd share my experience with you. They are telling me now the pain in my groin isn't from the pelvic fracture but arthritis in my hip. What a state we're in !! 😊
Hi Washingup. I empathize. What does the ametriptaline do for the neuropathy?
Amitriptyline helps me get a good night's sleep because it helps my symptoms.
Ok I see. Glad it's helping you. So far the neuropathy isn't keeping me awake. Although I haven't got it yet, the pharmacist has recommended time-released codeine fir the fractures pain. My GP is on vacay, so I'll get in there when she's back. T3 with 30 mg of codeine barely takes the edge off. My heart goes out to you. They just don't get it.
If you find a painkiller that works for fractures and arthritis let me know. I've tried codeine, naproxen, cocodomil, paracetamol, ibuprofen and even morphine but nothing seems to work. Just thought I'm now trying tramadol, so far no good.
What a state indeed! That sounds awful to have burning feet at night. Sleep is so essential and often difficult to come by.
Have they evidence that it is arthritis? I have hip pain, have had all the way through heading for 20 years of PMR. And it definitely ISN'T OA. It is a part of greater trochanteric pain syndrome which often crops up in PMR patients. I suspect OA is preferable as a hip replacement pretty much sorts it out! GTPS is a nuisance and needs shooting at from several directions!
My rheumatologist did an X-ray which showed arthritis in my hip after I complained of more pain in my groin, but it must be a coincidence that the groin pain only came on last year when I fractured my back and pelvis. I have been thinking that was the cause of pain not arthritis. I am on the waiting list to see my orphopedic consultant again to see what he has to say about it. I'm currently on 2mg pred and although the rheumy wants me to start reducing again, I won't because I couldn't stand anymore pain caused by a flare along with pain I already have. Thank you for reading my problems, I can't talk to anyone about how I feel. X
I, like Washingup, have severe osteoporosis and 9 spinal fractures. Two have been vertebroplastied, which caused those on either side to fracture. Codeine 30 mg. does not alleviate the pain. My pharmacist has suggested a long acting codeine. I have just started with possible neuropathy in my feet. Shins down to bottoms. Tingling pins and needles. The pain in your stomach could be back muscles pulling around. Mine do so, while trying to support my spine. I've lost 40 pounds so far, mainly because my stomach is so tight. Also diaphragm. I can walk short distances with a walker. Also have PMR and the steroids have caused the osteoporosis. I had a Zolendronic Acid infusion in October because my stomach wouldn't tolerate AA. I do see an Osteoporosis Specialist, have tried physio therapy and re-hurt my back. Fractures can occur without your knowledge. Baby your back. No bending to the floor, get a grabber. Lift nothing heavy, even a pot off the stove. Roll out of bed. The squeaky wheel gets the grease. Go to your A&E and raise a fuss.
Feel for you with the pins and needles etc, sounds awful. Think you are right about the stomach pain, that fits. I can’t tolerate AA either, and have opted for Prolia injections but haven’t started yet, waiting list. Definitely not lifting much, even the kettle is difficult! So far have been inventive about picking things off the floor but I really do need a grabber! My son is always telling me to raise a fuss - it goes against the grain but is necessary! I hope the slow release codeine works for you.
I have a back scratcher to pick things off the floor, but really do need a grabber. Anything I can't get has to wait til someone comes along as I live alone. Stuff up high in the cupboards is now on counter and in a container. No big deal. I manage to sweep but the dirt waits in a pile. Lol. Just don't do anything silly. Be careful of twisting. It doesn't take much to fracture or pull an already tight or spasmed muscle..Take care and I hope the Prolia works!
Yes, cupboards to counter top is familiar! And twisting is the worst. It’s amazing how often you normally twist and also what a very small twist is dangerous. Must be extra difficult living alone. My husband does his best but is not that agile as he has Parkinson’s. We stagger along! All the best to you
I strongly recommend a good grabber. I can brag that I've just actually cleaned my shower tray by just grabbing the cloth after spraying bathroom cleaner round the shower tray and wiping around with it. 😁 Even grabbed things out of my cupboards that's high up. So pleased with myself. 😂
Oh that’s interesting. You deserve to brag! I hadn’t thought of those uses, and can see it could be a. Great asset.
Having dropped things lately, have decided to get a grabber, maybe two, one up, one down. But there’s such a variety on offer. What did you get and would you recommend?
Mine came from Amazon. £17 for 32" which I find is enough for me but they do do 36" This grabber picks anything up.
This is versatile and will pick anything up no matter how small.
I've got a few as I used to do litter picking in the park during and after lock-down. One of them needs a really strong grip (Aptoper) so I'd avoid that if you have a compulsionto clean up your street or park. I know our local hosptial gives them out for people who have various surgeries like hip replacements so might be worth giving them a ring. I got one of them in Home Bargains, v cheap but does the job, I keep it handy in the kitchen for when dropping things near the bin
Thank you, good idea to try hospital but I probably don’t qualify. Who knows?!
Has shingles been considered? It's caused by a reactivation of the chickenpox virus (herpes varicella/zoster) that most of us carry from childhood. It often causes terrible nerve pain around the waist, usually (but not always) on only one side. The virus can cause a skin rash, with watery blisters surrounded by a red patch that resembles 'a dew drop on a rose petal'. Even if the full rash is not showing, the skin can feel itchy. Scratching (perhaps while one sleeps) soon breaks the skin. The nerve pain can persist or return long after a bout has healed.
Anything that weakens the body's immune system can encourage a reactivation and outbreak. Stress, old-age, sunburn, surgery, steroids, other infections and feeling run-down are common triggers.
It could be neuropathy because you can get that as a side issue with all the different conditions you have knocking heads with each other , the inflammation can cause pressure on the nerves , even the small fibre nerves and cause the neuropathic pain.Paracetamol or Codeine can help to a certain extent for that but you are usually better off with a low dose of medication used for neuropathic pain to get better relief.
It can take a number of months before the neuro pain killer works well , and a bit of trial and error of which to take , and at which dose , but it is usually helpful in managing the pain.
You should get the referrals Pro suggested , possibly you also require a referral to the Pain Clinic and a Neurologist as well but as you say these can take some time and the GP is allowed to prescribe certain neuro pain medications in the meantime for you to try to see if you get a positive response. This can actually help speed up the process when you get to see the Consultant as well because they already have evidence of how your pain changed on the standard drugs which helps them choose what to test first or try as further treatments.
You could get an appointment to the GP and ask to try one of the better first line options for Neuro pain . Pregabalin is better than Garbapentin with less side effects and is a good start but try beginning at half the standard dose and building up over a number of weeks to see how you respond with less side effects.
Duloxetine is another good option and can be taken in low doses with paracetamol and Pregabalin to help manage the pain ( it's not a cure ) , trying medications at lower dose combinations helps to control the pain with less side effects and those woozy feelings , as well as giving you room to manoeuvre and increase the doses later if you need to or you have a flare.
Reduce twisting exercises or movements and leaning down with your upper body below a 90 degree angle to your waist, they increase symptoms and stress in many spinal related problems. Warmth and heat therapy can also be very good for neuropathic pain.
Take care , Bee
A very helpful response, Bee. Spoke to a gp this am who has prescribed pregablin (I think it was that, phone line not good! ) a relief to find something I can do while waiting, even if it takes a while to kick in. And thank for advice on movement. The slightest thing can make such a difference. Many thanks
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