I was diagnosed with PMR in Oct last year - tried to stay postive but severe pain with sciatica is bringing me down. Its OK in bed but getting up its excruciating and I just manage to get to the toilet with a walking stick, GP says its piriformis muscle causing pain in leg.
Do you think this could be connected with PMR?
I am on 10mg pred, 2 x 10mg amitripoline and paracetemol.
Is there a stonger painkiller than paracetemol that we can take with pred?
Sciatic pain severe for 9 weeks - should I ask to see a specialist/consultant if any of you have experienced this I would be grateful for your advice.
Thank you
cassie
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cassie1208
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I have had sciatica for three months. I have been given co codamyl, paracetamol was useless I found. Co codamyl is not much better. I have started to go to have physiotherapy which does seem to help a bit. I cannot decide which is worse PMR or sciatica! I have been told it is the sclorailiac joint in my back that is inflamed. The pain goes down to my foot from my back. The worst bit is in my thigh I reckon.
My GP just said that the best thing I could do is get physio. I had gone through paracetamol, rubbish and then the co codamol, a bit of an improvement. She then offered Naproxen. I suppose if the physio had not worked, they would have gone on to checking with a scan. The physio said she found sciatica normally lasted up to six months. She said the cause was a very inflamed sacroiliac joint pressing on the sciatic nerve.
I had a severe problem with piriformis muscle last autumn. The same problem had been sorted a few times before with osteopathy. But last autumn it just got worse and worse, and was agony. Went away when I started on steroids for PMR last month. Might it be worth upping your pred dose in case the same is happening with you? We're you reducing your dose?
Yes thanks, I did up dose of Pred but no good - I had reduced gradually over 4 weeks. GP did blood tests to see inflammatory levels and said they are normal - but not sure if that rules out PMR related.
I had a bad bout of sciatica last autumn was on 9mgms prednisolone at the time. Dr put me on co codamal 15mgms then 30mgms and eventually Tramadol which helped with the pain. I live alone so it was very difficult to get around. Then I found a physiotherapist who did Bowen therapy and he said it was the piriformis muscle etc and after one treatment I was able to stay in bed all night ( couldn't before) had 5 treatments altogether and he sorted it out! That really worked for me, I do sympathise with you and hope it gets better soon, it's bad enough with the PMR !
Thanks for your understanding reply - it is good to know there are people out there to give a friendly ear. I will look into Bowen as it helps some people but not others and may be worth it. I am on 10mg Pred - GP thought it was flare of PMR and ordered blood tests which showed as normal inflammatory makers but not sure of it could still be a flare up though.
I have co codamol - what time of the day did you find it most useful? Did you take it all day or just at night? Tramadol I heard is strong but if it helps with the pain it may be worth it.
In the past I've not been able to take co codamal ( bad abdominal pain) but now I have probiotic yogout with berries for breakfast so I took it after breakfast and then when I needed them again I made sure I had something substantial to eat before and I was fine. They do consipate you you make sure you take senekot for that! When that wasn't enough the Dr put me on Tramadol which was stronger but made me very sleepy and not with it but got me to the physio ( no way could I drive though, even if I could have driven I would NOT have been safe!!). The physio really worked for me, it cost me a bit but was worth every penny. I had 5 treatments altogether and am ok now, just all the PMR stuff! Really hope you get it sorted it is a horrible thing. Will be praying for you.
Cassie, I have experienced this on several occasions, the first time many years before PMR/GCA and on that occasion I had it for a year. At that time the cause was put down to the slippage to my spine (spondylolisthesis). During my years with PMR/GCA it reared its ugly head again on a couple of occasions - just going over on an ankle was sufficient to bring on one bout. The only solution I came up with was to don a support girdle for a while until it eventually eased. I do feel that in my case I was more vulnerable to sciatica once PMR hit.
A couple of the members of my PMR/GCA support group decided to try Bowen therapy recently, one due to sciatica. He found it miraculous as far as his sciatica was concerned, with a great improvement after just one visit and it disappeared completely after a couple more treatments. He commented that it didn't do anything for his PMR pain, but it does seem to help many people with the knock-on effects from PMR such as sciatica.
Do give Bowen a try - I wouldn't hesitate if sciatica returned. I do sympathise - a horrid, debilitating pain.
Hello Celtic , and Cassie1208..As I am the other member of your PMR/GCA Support Group that is having Bowen Therapy then I would like to say it is not a miracle cure but it does help me cope with my pain more .The recent Cold Virus I had seemed to attack all my bones and the PMR in my upper arms and shoulders was unbearable ..I have been wearing Capes or Poncho's when going out because I just couldn't get my arms in my sleeves . My lovely Bowen Therapist has been so kind and understanding and the pain in my left buttock she has put down to Sciatic pain and not PMR. I would say to anyone with PMR / Sciatica or Myofascial Syndrome etc to give Bowen Therapy a try. I have been having this Therapy since August last year and I am still amazed at how sore my Body is when my treatment begins and then when I'm touched in the same area a little bit later I don't know I am being touched. My Favourite bit is when my Kneck and head is treated and it has Definitely helped with my Migraines. I come home quite relaxed and try and rest and have a quiet day for the rest of the day .I also find that Bowen Therapy helps my swollen feet and ankles and water retention.. Last time I praised Bowen Therapy on here it caused quite a stir but you can only say what you have experienced. Lol Celtic, and I was so sorry to miss the last meeting and Best wishes to Cassie 1208
I hope you are feeling well Trish and thanks for your advice - I haven't had a cold all winter so fingers crossed! I am taking Manuka honey and it may be doing me good.
I never thought of Myofascial Sydrome in fact never heard of it so will research into that and Bowen Therapy.
Are swollen ankles, water retention a symptom of PMR/Pred use as my right ankle was puffy over the weekend and I have never had that before.
Hello Cassie1208.. I have been suffering with water retention on and off for some time and through my GP ( who has no patience at all with PMR) and my Rheumatologist who is very patient I've always been made to believe that it's a combination of my Blood Pressure tablet and the Predisolone. It's much better than it was.
When I started my Bowen Therapy last year I weaned myself off of the Steroid Sparing Agents. My painkillers are cocodamol which at the moment arent strong enough.but I just can't get below 13mg on the Steroids. My Body just wants to shut down like it did all those years ago when I was first diagnosed with PMR..its very hard..it seems to me that you could have a bit of water retention .. Although I have had PMR for a long time I know that PMRpro, Celtic, Dorset Lady and many others are much more experienced to give advice ..it woudnt hurt to get some advice from your GP. Getting advice from this Forum is one of the better sides of PMR/GCA..and maybe joining a Support Group as well , I have learnt so much over the years ..Look after yourself now ..Best Wishes. trish29
been there I had it for three months altogether none of the pain killers work they only numb it slightly phisio eventually told me to (get the pain under control!!!) and walk how do you do that but eventually like all things it went away. Its horrible.
It could be either piriformis syndrome as your GP suggests or myofascial pain syndrome and both are often found along with PMR. Myofascial pain syndrome is due to the same cytokines as PMR except they are in trigger spots in pairs alongside the spine and can often be felt as hard knots of muscle fibres in the shoulder muscles, about rib level and in the low back. The piriformis muscle is in the bottom of your buttock and the nerve runs through the muscle in some people. The spasmed muscles irritate the nerves and cause referred pain. Often they improve a bit at higher does of oral pred but come back as the dose goes down. I'm not impressed your GP hasn't offered physio because it is possible to help piriformis in particular with physio.
I and several others with the same problem got a lot of relief from Bowen therapy - sambuca who often posts on here was like you for a couple of months, could only get to the loo using a zimmer frame. She managed to get into the therapist with a walking stick in one hand and her friend on the other, there wasn't room for the zimmer in the car! After an hour's treatment she walked to the car and had to go back to fetch the stick! She had a few sessions to get it right and now goes every 6 months for a "top-up". As the others say - it won't sort the PMR but if does help with other things and any reduction of pain is a positive.
This is a good article about piriformis syndrome with suggestions for helping the pain:
Thanks to you and others suggesting Myofascial pain possibility - never knew about it so will look into that - and advice re Bowen and how it helps some people. My GP is phoning on Wednesday - I need to be assertive and ask for physio as pain is bad especially in the morning when getting up and after sitting down.
How is Myofascial pain diagnosed - are there tests- I am wondering if I should press GP to do more tests instead of me just accepting diagnosis of sciatica.
The spinehealth website is really good and gives good , practical advice - much appreciated.
A good physio should recognise it. There are the typical trigger points I described and they can be felt as well as being excruciating when pressed on. They are different from fibromyalgia trigger points though. Here it was the orthopaedic doctors in A&E who recognised the problem although a private orthopod I had seen the year before had told me it was wear and tear in the lower spine and I would have to live with it. The physio and the pain clinic doctor both knew what it was and were flabbergasted an orthopod didn't. The physio said it was probably not serious enough for him to have an interest!
I think the dx of "sciatica" is fair enough - but what he needs to do is find what is CAUSING it. There are several reasons the sciatic nerve is painful and something can be done about most. x-rays first of all to be sure it isn't discs rather than muscles and a physio would be easy enough.
Thanks again- I seem to have a focus now after reading your message- I need to ask what is causing it instead of just being handed a prescription - so I will be assertive - GPs seem to do lots of advice phone calls now instead of seeing me.
Intreresting to hear of your experiences and how professionals can differ.
I am wondering if a physio can order x rays if thinks necessary or is it only a GP
I'm sure I've been sent for x-ray by a physio, my daughter definitely was, and an MRI, but it was a specialist physio who worked only for the Knee God.
Due to transplanted kidney I have to watch which is understandable what I take
In beginning when it was realised I had this problem I was given 6 steroids now for the last month or so have had to cut them to two and now everything is coming back with vegeance and like you don't know what to do got a hospital appointment next week so will see what happens then
I am taking 30gram of codiene and 500 of paracetamol
Sorry can't help if you come up with anything please let me know
hi June - Thanks for your reply - sorry to hear you have bad sciatic pains like me. It is hard to keep going but I try.
GP gave me codeine - what do you find it the best time to take it? and paracetemol too? Do you take them just at bedtime?
My routine is that I cant sit on my sofa - rather it is OK when I am relaxing on it but severe pains on getting up radiating down right leg - painS last til I go to bed.
Luckily when I keep still in bed I can sleep for 3 hours at a time- then going to the bathroom I need a stick to get out of bed and the pain is on another level!
Then when I have been up and walking subsides somewhat but there 24/7 - I would find it useful to know your routine with codeine and paracetemol please. Just at night or all day?
I have got a reclining chair arriving next week which I hope will make a difference but anyway with PMR have always wanted one.
Did you ask you GP tp refer to hospital? Did you ask for physio - I just dont know what to do next.
A lot of questions I know but thanks for yoyr time - and I hope you get good news at hospital- let me know if you can email me personally or through the forum if better.
Cassie, I had a major problem with piriformis syndrome just before my PMR was diagnosed. it was so bad on my right side I could not sit at times, and on a couple of times it crept up on me when I was driving in the car and was total agony - don't know how I managed to drive home, trying to sit side-saddle in the seat!
Sorry..to continue.. this I-pad drives me crazy, I apparently pressed wrong button..... anyway I found a fabulous PT who sorted it out like magic. She showed me some very gentle stretching exercises, and whereas I would limp in for therapy hardly able to walk, she would do gentle massage - similar to Bowen therapy ?- and I would walk out of there a different person. She told me the the sciatic nerve goes through that muscle in some people, so if the muscle cramps or spasms it pinches the nerve and voila horrible pain. So key is to relax the muscle. After I knew this, I could pretty much take control of it and if I feel a twinge of it coming on now I wll put heat on the muscle for a while ( hot pad/hot water bottle) and then gently stretch it out.
You can look for stretching exercises for this online, which should help until you can get into therapy.
Thanks again - just raed you other email and will insist that GP arranges physio as I think the right exercises will help and I will try heat/ice - I dont know which is best - trial and error!
It was very good and he gave some great stretching advice. Mine is rearing its head again as I am dropping to 7.5 mg so I will have to use the site again myself. If no improvement I will certainly give Bowen a go but at £45 a go I hope it works. Hugs to all x Mary
Thanks for the advice and website - it has some good ideas for helping to treat sciatica - I will look in to Bowen as it helps some and not others. People on this forum have said that dropping Pred dose may trigger it and you nave to watch that yourself by the sounds of it. I started on Pred in October on 15mg and have reduced slowly to 10.5 ( for 2 weeks now) Thought I was doing well but never realised it could be the lower dose that could be connected with sciatica even though last week I had a normal reading in blood test for inflammatory factors.
I am currently suffering a recurrence of sciatic pain. I woke u p one night a week ago unable to move my right leg for the pain and felt like a truck had hit me the next day. This had been coming on for some time . I take gabapentin for this kind of nerve pain. My doctor prescribed it as an as and when pill but the pharmacist and some one else said that to calm down the irritated nerve in Sciatica it should really be taken as a course of tabs. for months rather than weeks. .and it did seem to work but would it have gone away anyway ?. I have Parkinsons as well which can also produce nerve pains in the muscles so I am already taking it every night (reluctantly) - just one or two x 100 mg capsules - so I get some decent sleep, i.e. 4/5 hours continuous and a nap if when can in the afternoon. As I am already doing the recommended exercises its is difficult to know whether to bother seeing the doctor about this latest bout which is beginning to get me down. Do rheumatologists deal with sciatica? I am wondering whether it would be a good idea to try and get my rheumy appointment brought forward from August which is nine months gap from the last. At least writing the above has cleared my sleep befuddled mind a bit especially now I know sciatica is a feature of PMR. not to mention the blurred vision.
Thanks for your informative reply - I am also wondering if I should ask GP if I can see a specialist but I am not sure if it is a rheumatologist for sciatica - I am going to see if physio works as I have to do something - I dont like taking all these meds - who does anyway but necessary right now.
I do hope your sciatica disappears soon = it is awful and draining.
My sympathy re Sciatic pain. Mine seems to come and go constantly, since PMR diagnosis last July, not always in same leg. My GP sympathetic and prescribed Neurontin which is a nerve pain blocker used in epilepsy. Gave me a gradual build up in dosage...........and it does the trick. I know I still have the sciatica because I have a mild ache and reduced mobility but the severe pain that makes you feel sick is gone.
Now I can swim better, and try walking more than 50yds with my walker. My muscles feel a lot better for this. This medicine ( number 12 tablet) only started a week ago and only reached max dose yesterday. Hope it is a long term solution.
Good to know your pain is under control and manageablel as we know how awful and draining it is. You mentioned swimming - up until the past 5 weeks I went to the pool 3 times a week but now too painful - not during but afterwards .
I will get further advice from GP this week re exercise and meds.
I haven't read all the replies so perhaps this has been addressed. I started having what was called sciatica pain that became so bad some days I couldn't weight bear. The pain was in the hip joint, sometimes down the side of the leg. My doctor was concerned about avascular necrosis of the hip joint which is caused by Prednisone and can present similar to sciatica. so he ordered an MRI. There was no necrosis but it did show a large tear of the gluteal muscle ! probably cause by Prednisone too though. It started about 6 months ago and some days is still very painful. I've been given exercises to do and having physio and he wants to add acupuncture this week. Hopefully it helps because walking is one of my few pleasures and I hate having to lose it! Best of luck !
Thanks for your advice on this horrible pain. I will see my GP this week as my pain especially getting out of bed or from a chair is bad. I don't know whether to press my GP for MRI as I want to know for certain if it is sciatica or another problem. Reclining chair arriving this week as I cant sit on a low sofa without pain on getting up lasting an hour or so.
Hope your pain disappears very soon and good luck to you too!
Yes, mine is worse with those first steps in the morning or getting out of a chair. When mine was at its worse you could feel it was swollen over the joint. And even now when it has improved some, it is still too painful to lie on. The chair sounds wonderful! Best of luck to both of us for a quick resolution to this pain in the butt! lol
Hi- too true lets hope it's goes away soon as I try not to let my life revolve round it but sometimes it's difficult when visiting and having to sit on a dining chair with loads of support or a car journey. I am so looking forward to my chair but I know it will not be a cure but a help relaxing- i deserved a treat anyway with PMR we have to spoil ourselves sometimes!
Hope you have a good sleep tonight with no pain on rising! I think sometimes I will wake and it will have disappeared but not to be!
Regarding tablets, Neurontin is a brand name for Gabapentin. N.b. the dose for use as a nerve pain killer is very small compared the dose for epilepsy which it was originally developed for.
I've just started with sciatica too, and trochanteric bursitis. Seems a lot of us who have PMR get these things, but then as my GP says it's incredibly common in middle age onwards and may or may not be connected with having PMR. Very irritating, mine manifests as constant pins and needles in the front of the left thigh between knee and hip. If it is the kind that stems from muscular spasms it seems exercise can help. Probably best to see a physio, but having read so much about Bowen am thinking of giving that a try.
Thanks for your message and I hope the sciatica improves soon it really is horrible! I want to know what is causing it but it is a slow process with GPs. I have been referred to specialist practitioner as it has been painful for 10 wks especially after sitting or lying down. I like to think I am a positive person but its getting me down. I went swimming yesterday but it was Ok in pool but terrible afterwards. Oh well I treated myself to a recliner chair which is great for relaxing - good job I kept dads walking stick from 30yrs ago- coming in useful!
I am reading older posts and hope your sciatica problem has resolved. I was surprised at how many people had responded to your post having the same problems. I am also surprised that sciatica has not been linked to PMR. Or is it linked in the fact that it could just be one of the many muscles (pririformis) that PMR chooses to affect?
My bout with sciatic pain started last July. At that time I took on a volunteer job that required me to sit for long periods in front of the computer. I developed an intense pain in the butt which went down the side of my left leg to my foot. I went to rheumie who gave me two injections in my butt which caused no relief. Went to my pain management back doctor who told me that due to the degree of problems in my back, that it was time to see a surgeon.
In view of the fact that I know so many people who have had back surgery that made them worse than before I opted to see another pain management Dr.
So in Nov 2016 I had a neural stimulator placed in my back. The sciatic pain continued but not continuously and not as terrible where it would literally bring me down on my knees. Ok next thing that happened. On January 3, 2017 I woke up with the most excruciating pain in my right shoulder , went to neural stimulator guy and this pain Doctor gave me , what he said was a strong steroid/pain injection into my shoulder. The pain went away and so did the sciatica. I mean almost immediately I was pain free, first time since July.
That was the good news. On the 5th of Jan, 3 days later, I woke up with difficulty breathing, pain and stiffness in my neck, pain in both shoulders, pain in biceps. Went to the Emergency Room at hospital and was originally dxed with peri carditis (inflammation in sac around heart). Next day some dr came in, took tests and dxed me with PMR and started with 30mgs of Prednisone. Sciatica was gone, replaced by typical PMR symptoms. It almost seems to me that the inflammation that PMR causes - has to manifest itself somewhere. Phew are you still with me? All I wanted to tell you was some sciatica hints, I didn't mean to write my autobiography.
One of the things that seemed to help relieve the sciatica was sitting on a pillow. Not a soft pillow but a preformed posture cushion that goes behind your back in a chair or while driving. BUT I sat on it - hard part and all and it seemed to deflect the nerve that something was pressing on or the something from the nerve. I was also thinking that placing a pool noodle (do you call those styrofoam tubes that float in a swimming pool - noodles?) well they are tubular and firm. I would try putting one under your affected butt/leg to see if you can get any relief by taking pressure off the sciatic nerve.
I also got some relief from sleeping with a pillow between my thighs (but kept waking up when I turned over and messed up my pillow configuration.). I think if you do sit a lot you should try to change positions often and/or the conformity of your seat so that you are not perpetuating aggravation of muscle or nerve.
Ok If anyone is still awake promise not to write for a long time.
Good advice 're pillows etc. I wouldn't be quite so nervous about surgery. I had it in 1999 after 8 months of utter and total agony and being unable to sit or stand...only crawl in tears. I would have had left leg amputated if I had a choice at that stage. Fortunately I had surgery with neurosurgeon having been advised not to go to orthopaedic surgeon and it was like Lazarus rising post surgery. I was left with nerve damage due to nerve being fully trapped for 8 months and nit the surgery. I did all the rehab. ok I do have sciatica in right leg now but I think my back has been an issue since first bout of sciatica when 18. For me the surgery was a complete success in terms of what I was promised pre surgery. Just a knackered back from lack of care up to 99.
I am comforted by your surgery success as it still could be in my future. Funny I was told by the orthopedic Dr who gave me a total knee replacement - when I asked him when I would know I was ready for surgery. He replied, "When you are seriously contemplating cutting off your leg as opposed to replacement surgery"
I can confirm that feeling. lol. Would recommend finding good neurosurgeon if you ever are in need. But if you keep taking care hopefully will be ok. I was mid 30s when I had surgery and once rehan over had to return to work and spent years driving 200miles a day to work and hammering my back teaching ICT in that slightly bent position that wrecks backs. My own fault But had a mortgage to pay.
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