Last week we had three nights away from home, going by train to York: six hours ech way.
We had a short walk over a bridge to the hotel, which should have been well within my capabilities, but I was exhausted ie weak kneed and near collapse. After supper we walked a short distance near the hotel and I was *very* happy to get back to base. The following two days we were back at the 'hotel' by 2 pm as I couldn't walk any more and there is a limit to the no. of cofee stops one can have!
Back home I am trying to keep active, although I would love to just relax.
Has anyone else experienced this? Do I rest or keep active? Both in moderation, I suspect.
I am seeing my GP on Tuesday and will, of course, discuss this, but am grateful for any suggestions. I feel perfectly normal sitting down or driving. It is just standing and walking!
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Trenny
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I have problems walking.. i had to call my sister to come and get me as i got stuck in high st i couldn't take another step. I get pain on lower legs (outside) my shins hurt and legs throb and like a burning sensation... this is when walking and sitting ..get pain in both hips too.. i don't know if its preds or what.. i used to walk every day when first diagnosed.. i was on 60mg's then and could manage a 2.5mile walk now as i reduce the pred ( i am on 45mg's ) i can hardly walk to end of street! I haven't got a clue whats going on and to be honest the health professionals dealing with me do NOT give me any faith in them at all..
Yes, pred can do that. Have a look at your legs too - is there any sign of muscle wasting? That is also a side effect of pred. If so, your GP should be able to get you a physio appointment for advice.
Don't worry about keeping too active - rest is just as important. For many of us 6 hours on a train one way would have knocked us for 6 never mind the rest of your lovely trip! I spent 9 months on crutches a couple of years ago partly due to the form of pred I was on at the time but on another sort I have slowly got back to normal. In the interim, the crutches allowed me to walk far further than I could have without them. I got to the stage of seriously considering a mobility scooter and I do know a couple of ladies who have invested in rollators - because then you can walk and always have a handy seat. It isn't giving in - it is keeping you mobile and that is important too. Walking a short distance, having a bit rest and walking again is good - but there isn't always a garden wall to sit on as one of my friends did. On one occasion a neighbour helped her home! You are by no means alone.
I dont know the signs to look for .. i keep telling them about my legs and all they done was feel the pulse on the arch of both feet and said pulse was fine they didnt touch my legs or ask me to lift them...i just must have the worse docs ever dealing with me.. i cant get anyone to listen, feel totally let down .. at night the burning sensation and throbbing when in bed is so damn painful....
I have exactly the same pain as you in my legs and feet at night. I take amitriptyline, it helps the pain a little and ensures I get to sleep. I am waiting on nerve conduction studies to try and find out the cause. It certainly doesn't sound like Fibromyalgia!
I too have incredibly painful feet and sometimes legs. And you are right, the docs don't seem to know what to do with us. Have you tried taking extra magnesium? I would say that overall there has been improvement in legs and also in neck muscle spasms since starting 'yet another supplement'.
Trenny, it is frustrating not to be able to function at the level we were used to, isn't it! I have pain in the lower back, upper hip area when walking. Some days I can make it about 4 blocks and then I'm done for if there is no place to rest. Having been a great walker, this was initially frustrating until I acknowledged that the only thing defeating me was my attitude. Found that movement in the pool was a good substitute. So I am grateful that is accessible, yet realize we are all different and what works for me may not work for others, or for me at a different time or on a different day. This disease is indeed a chameleon!
That sounds as if it could be trochanteric bursitis or myofascial pain syndrome. TB responds well to a cortisone injection. So does MPS but it can also be dealt with by physio or massage to disperse the hard knot in the muscle in the lower back. It can also happen in your shoulders.
I find your suggestion very interesting as I have had PMR for 6 years. My original dose of the drug Prednisilone was 25ml, but over six years I have been able to come down very gradually to as low as 4ml. This only lasted a few months though when I had to increase the dose back to 5ml due to an increase of pain and mobility. On 21st January 2015 I awoke with a severe pain in my left hip. I decided to take Paracetamol but it had no effect so I made an appointment to see my GP. She advised me to increase my dose of Prednisilone to 10ml for one week and then review the situation. During this time with a little relief I travelled to see my son in Hampshire, but during my stay my condition became much worse, the pain was so acute I couldn't walk or even put my left foot to the ground. My son took me to his local Medical Centre. The doctor there thought I might have fractured my hip but wasn't sure, so suggested I increased my prednisilone to 25ml The following day I returned home and was seen by my GP who referred me to the A & E at Derriford Hospital in Plymouth. I was admitted for assessment and treated with analgesics for the pain. Two days later I was discharged and sent home. After X-Rays I was told I had trochanteric bursitis. As I still couldn't walk due to the severity of pain in my leg....felt Iike lead, the Physiotherapy Department at the hospital supplied me with a walking frame, a seat to use in my shower and a commode as I wasn't able to lift my legs to walk up stairs or steps.
On 22nd February 2015 I was referred to the Royal Eye Infirmary as I developed severe pain in my neck and temple area. My doctor thought it might be the start of GCA. I spent the whole afternoon having tests and at 8.00pm was told there was nothhing conclusive, but to report to the hospital if it ever happened again!
At the moment I have decreased my Prednisilone down to10ml as advised by a hospital Consultant.
I'm writing this from my bed as today the pain has been bad, so resting does help.
My doctor has contacted me today saying he has made an appointment for me to see a Rheumatologist on Tuesday morning next. My hope is that he or she will be able to throw some light as to what might be causing this problem.
If they diagnosed trochanteric bursitis - and what you describe fits - why on earth didn't they treat it properly? With local corticosteroid injections? That is the only thing that works reliably. Typical b£**%^ UK, don't treat the cause, facilitate living with the symptoms! None of the other "inventions" have proven to do any good. Sometimes it will improve with rest and icing - but when it is so bad you can't stand on it it is too late for that.
I had bursitis as part of PMR originally but it wasn't too bad (in terms of it wasnt agonising, just constant pain) and eventually faded after 6 months of 15mg pred. I have had a couple of nasty spells of myofascial pain syndrome but that pain was all over my back but localising in the lower back, around the sacroiliac joint. The trochanteric bursitis returned and simply got worse. When I asked what pain killers I could use to cope with it because of other meds the hospital physician looked horrified at the idea, said "not a lot" and sent me to the orthopod for cortisone injections. The pain improved dramatically over the next 2 weeks and the residual bits were dealt with by another shot a few months later. I had some twinges a few weeks ago, one shot did the job.
"The doctor there thought I might have fractured my hip but wasn't sure, so suggested I increased my prednisilone to 25ml" - I'm having a Victor Meldrew moment here...
Gosh, how strange, when I was being questioned by a Rheumatologist today I also reported the exact symptons you mention regarding pain in the lower back around the sacroiliac joint as well as the excruciating pain I am experiencing in my left hip and groin area. The examination was through, and I was sent to have X-rays of my hip and lower back area as this gentleman doesn't think I have trochanteric bursitis....his main concern was the pain I am experiencing at this moment in my left hip and groin radiating into my lower back but also the fact that Iv'e been taking the drug Prednisilone since 2009, saying that usually patients are being weaned off this drug gradually over two years when hopefully after this time some patients are pain free and able to continue living a normal life. I am to be seen as an Out-Patient at the Rheumatology Clinic again in 6 weeks time, in the meantime my Consultant will be contacting my GP recommending changes to some of my medication. There was no mention of any injection being given to relieve the pain in my hip, but he did said he wanted to have the result of the X-Rays taken today before making any decision regarding treatment.
When I had the really bad sacroiliac problem I was admitted here in Italy for treatment using i.v. steroid plus a pain reliever and a separate i.v. of diazepam - the first day worked a treat, I went from unable to move because of the excruciating pain to pretty much normal. The second and third nights I developed atrial fibrillation and tachycardia - an unusual but known side effect of i.v. diazepam so that was stopped. That was their first line speedy approach as I was in so much pain - so I was demoted to the slower methods.
By then the acute pain was gone so I was sent to the pain clinic where an anaesthetist prodded my back and commented on the fact the muscles were totally in spasm and as hard as a board. She used cortisone shots all over the back: specifically into the myofascial trigger spots (google it) and also used a technique which in the USA is called needling (google it too). It involves repeated deep subcutaneous (I think) injections into the spasmed areas using cortisone, saline or even dry needles. In that sense it is a bit like acupuncture but the needles aren't left in place. I've also had it done in Germany years ago. Each injection burns and is exquisitely painful but after you have had it done once you don't mind the next time - the relief it gives is amazing! Everyone I know who has had it says the same.
She spent a few months repeating this, each time the back muscles were in a better state. She also did some manual mobilisation of the myofascial trigger points. They are concentrations of cytokines, the same substances that cause the pain and stiffness in PMR, and are in pairs on either side of the spine, about where a baby's dimples on their bum are, alongside the spine just above your waist and in your shoulders.
I have discussed this with an orthopod who does research into this and he says that this is often found along with PMR. At higher doses of pred it responds too but it returns as the pred dose is reduced and people think it is part of the PMR. It may be - but it works better to target it separately with local treatment rather than systemically with the oral pred. If you use manual techniques or massage it tends to release the cytokines into the body and you apparently have a flare of the PMR - I don't mind that, I know what is happening so don't panic. I used osteopathy, massage, Pilates and Bowen therapy to keep me upright and functioning for the 5 years I had PMR without it being diagnosed. I was in pain - but for most of that time it was liveable with. Then it went mad and the first day of pred after 6 months of that was a miracle. The injection techniques I had here didn't make the PMR flare so are better in that sense I suppose.
I am sure that it is patients who have this who often become the resistant patients who are unable to reduce pred successfully. I'm working on persuading researchers to look at this. In the meantime several people on the forums with similar problems have derived great benefit from Bowen therapy. I don't know how it works - I know the theory, maybe their theory is right - but I can honestly say it was worth every penny I spent on it! And it is so gentle it cannot do any damage so is always worth a go.
Very interesting reading...It's a week since I had the X-Ray to my lower back so it'll be very interesting to see what the prognosis is, and what treatment, if any my Consultant recommends.
Ladies - I have had exactly the same symptoms and problems with Trochanteric Bursitis and Sacroiliac pain, coupled with my PMR and GCA and emergency appointments at Eye Department. From Jan 2015, 15mg Pred - since June 2015, 60mg and now 90mg. I am now under Eye Department, Orthopaedic and Rheumy Consultants. Orthop won't give me any injections, as I am on such a massive dose of Pred, but I am hoping that at long last, I shall start having some improvement. That is just a summary in a nutshell of the past 7 months - and I can honestly say that the only thing that has kept me sane is this site - reading other people's posts, seeing myself mirrored there, and all the answers from such helpful people. Thank you all so very very much.
If I stand or walk for more than a few minutes my breathing goes very bad, not like my asthma , I can breath through my mouth and nose and my lungs are fine, it's like I haven't got the energy or power to work my muscles in my torso.
This is so interesting as it could be me and now I need my right knee replaced probably because I have neuropathy in my left leg (after having shingles in it). My vasculitis is under control with 1000mg Cell Cept x 2 and 1.5mg predisiolone. My consultant advises me to have the op but I am very nervous in case it starts everything up, any advise would be welcome.
I know people with PMR who have had hip and knee replacements - they have done really well post-op in every case (now I think about it probably because they are used to pain when moving) and have gone on to need less pred afterwards - almost as if the PMR is aggravated by the hip/knee pain.
I had a knee replacement several years ago and cannot say enough about how much it improved my quality of life, NanaB43. (It was long prior to PMR.) If your doc feels you are a good candidate, and based on PMRPro's narrative about others who have done it with PMR, I'd say go for it.
Prior to surgery, I did an informal poll of people I knew who had knee replacements, asking about their outcomes. To a person, when they complained about the tediousness and pain of the post-op therapy, they also reported less than optimal outcomes. Imagine that!
PMRPro's assumption that maybe we are used to tolerating more pain is probably spot on. I believe you have to be absolutely committed to the hard work of post-op therapy to get good range of motion. That, at least, was my experience. May be different for others.
Absolutely - if you don't put the work in you won't get a decent result. Most post-op problems are nothing to do with anything the surgeon did - but what the patient didn't do.
I have not been able to bend down for three months due to pain in my hips back and legs. (been on pred for 12months starting at 50mg and now on 20) I was recently examined at hospital in Rheumatology dept and was shocked to find that not only has my leg muscles become very flabby and wasted but when asked to lift my legs from a laying down position I found they were so weak that they were trembling. I was advised that this was due to high steroid use. don't know if this helps?
I wouldn't be surprised if there are 2 things here Mike - not being able to bend could point to myofascial pain syndrome - spasmed muscles int he back that form knots of muscle fibres that can pinch nerves nearby and cause awful referred pain too. Massage or physiotherapists can deal with it if you find one who knows what they are doing.
And yes - muscle wasting is a common side-effect, especially at high doses of pred. Medrol at never above 20mg did it to me - other forms of pred don't and after nearly 2 years on something else my leg muscles are back to normal.
Hi PMRPro thanks for responding, Professor Dasguptor has arranged for me to have the following. PET-CT scan MRI spine and hip joints and bloods covering a whole range of conditions (ten in all) so hopefully this will explain why 20mg of pred did not dampen down the pain, Azathioprine or Leflunomide may be added to pred in six weeks when down to 10mg, But I am not looking forward to no alcohol.
No - I wouldn't fancy having to go on the wagon unless they could assure me it would work and cure the problem so I wouldn't be on it for long Someone said once that PMR was bad enough in taking away so many pleasures/expectations that the idea of not being able to have a glass of wine of an evening was too depressing to contemplate. Dreadful generation aren't we!
Trenny I feel for you as I have trouble walking standing and I am housebound have lower back pain ,left hip arms and hands hurt Feel dizzy and breathless sometimes balance is poor I wobble a lot along with swollen legs and feet always had a problem with ankles but much worse since this illness.Extreme tiredness does not help. I have a wheelchair but need someone to push it got to the point I don't want to go out .
Think I can safely say we are all in this together and can check out our problems are related for the most part to the illness or treatment. Keep your chin up and best wishes hope we all make progress . Take Care Val x
Many thanks for all your replies and comments. It is so good to know that one isn't alone and to be able to off-load a few concerns. It also gives a few pointers to coping. MJJ7960, you have inspired me to start swimming again.If only there was an alternative to the steroids.
Yay, Trenny. Just remember that "swimming" doesn't have to be going end to end up and down the pool, ad infinitum. I often stretch, paddle hanging onto the side, "run" in place, pretend to be a tadpole -- anything to have fun, lift my spirits, and MOVE.
You must remember that the steroids only deal with a couple of the aspects of the symptoms of PMR and GCA - they are not a cure. Underneath it all you still have a chronic illness, so don't beat yourself up if you find you can't do what you used to do. You should be able to do moderate activity, but maybe at a level of 50% of what you used to do. And then build in twice as much recovery/rest time as you did before.
Just walking up and down in the water is an excellent start - what I was doing nearly 2 years ago, now I can walk for a couple of hours with a refreshment stop! Don't overdo it - it is easy to do since everything you do in the water requires about 7 times as much effort as on land. Gently does at at first and stop before you are tired. And as Kate says - recovery works better when you have at least 1 day off between each session to start with. You will be able to do more later - just not yet.
Going back to the walking problem I saw my GP this morning. She looked at my legs and said that there was very slight muscle-wasting, but couldn't offer a solution. Probably due to Prednisolone or 'ageing', but have to accept it - so press on...
I am on the slow reduction program to get down to 11.5 mg Pred. and below.
I am going to sign off the Health Unlocked site for a bit and let my GCA problem go into the background, hopefully.
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Someone said once that PMR was bad enough in taking away so many pleasures/expectations that the idea of not being able to have a glass of wine of an evening was too depressing to contemplate. Dreadful generation aren't we!
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