MOBILITY

[CarrieP]

I have had PMR since March and down to 10mg of Pred. Since this all started I have lost my mobility and now having to use a walking frame to get around. I have fluid retention in my left leg and my left arm and particularly my hand is very stiff and I cant do much with it. GP says I must have done something to my wrist but I think its all to do with PMR. Has anyone else experienced it?

[Chihuahua1]

I had fluid retention before PMR was diagnosed , but don't know if it is linked. I was told that Prednisolone can cause fluid retention, but have to admit I haven't heard of it only happening down the one side. I am currently under the hospital for hand issues as someone, I can't remember who, told me that PMR can cause synovitis, which causes pain, swelling and stiffness in the joints of the hands and feet. Whether that is due to the disease or the steroids I don't know.

[PMRpro Ambassador in reply to Chihuahua1]

Tendonitis and synovitis is part of PMR for some people - is that what you meant?

[Chihuahua1 in reply to PMRpro]

Could well be. My mind gets in a fog sometimes and I end up mixing things up. Sorry

[PMRpro Ambassador]

If the problem is on one side I would not really suspect it was due to the PMR. If it is affecting your leg how can the GP link it to a wrist problem? Not much logic there!

However - a few people who have needed a walking frame to move about at all have derived great benefit from a complementary technique called Bowen therapy. Some of them may appear and provide their stories - but I think it would be well worth a try for you. If it is going to help you you will see a difference within 3 sessions - if nothing has happened by then, it possibly isn't for you. But I find it as relaxing as a good massage so would go anyway!

[Rokerman]

Hi Carrie - I was diagnosed in April and am down to 8.5mg (am lowering at 0.5mg per month) - currently on a week's holiday, so supposedly less stressed?!

For the last few days, and today in particular, my wrists have been extremely painful. I've never broken my wrist but I'm guessing that this is what it must feel like! Even driving was tricky....!

[trish29]

Hello CarrieP ..l agree with what PMRpro has said to you !! I am a big fan of Bowen Therapy and have a very caring Therapist..over the last year it has helped my fluid retention problem and my ankles don't swell as much as they did before I stared Therapy.I still suffer morning stiffness and my Mobility isnt good but I use a sit on walker and I have have a Mobility Scooter. I have had my PMR for 13 years but I've Always tried my best to follow Drs guidelines and follow what ever they asked of me medication wise but due to early problems re my previous Medical Team that obviously other issues got out of hand but then again I feel that maybe I am luckier than some ..Not being able to walk is heartbreaking for me but I do the Best I can. At the moment I've been fighting a Viral Infection for a few weeks and that has affected my upper arms and shoulders and my Right wrist ..pain all the time and not allowing me to do my knitting or crocheting which is my pain Therapy when times are tough .. I would recommend Bowen Therapy to Anyone ..it's a wonderful experience and so relaxing . I hope things improve for you .trish29

[Manchesterlady]

Hi trish ,

I'm anewby on here and my doctor is still doing more blood tests . Will probably be put on pred next week . Although I'm reluctant to take it . I am in a lot of pain , and can hardly get about . I have booked myself in with a Bowden technique therapist in two weeks time so I'm interested that you found it helpful.

[PMRpro Ambassador in reply to Manchesterlady]

Bowen won't help the PMR - but it could well relieve the add-ons. And as I keep saying - every little helps!

For the PMR - pred is, unfortunately some might say, the only answer. It is, however, usually a good answer.

[Kezy]

What is Bowen Therapy please. Not heard of it before.

[PMRpro Ambassador in reply to Kezy]

It is a very gentle, hands on, noninvasive complementary physical therapy that I sort of think of as "chiropractic for soft tissue" (i.e. muscles and their attachments). Absolutely none of the risks you hear of with "bone cracking".

bowen4life.com/ is one of the best sites I have found to explain and demonstrate it, it has videos as well (PS I've never worn as little during a session as the model in the video!).

One lady on this forum (whose middle name is sceptic) had been stuck in bed for a few weeks because of back pain, barely able to get to the bathroom next door even with a zimmer frame. I nagged her to visit my Bowen lady who lived just a few miles from her. A friend took her in her car but there wasn't room for the zimmer. She managed to get across the pavement and into the room with the friend on one side and her trusty walking stick/cane in the other hand. After an hour's session she walked back to the car unaided - only to realise she'd left the walking stick behind and had to fetch it! After 3 sessions the back pain was gone - and now she just has occasional top-up sessions. If it hasn't worked in 3 sessions it probably won't - although there are people on this forum who keep going back because, like me, they find it as relaxing as a good massage but far less uncomfortable because of their PMR.

It won't cure PMR - but complementary therapies are quite useful to make life that bit more pleasant in any disorder. I've lived in central mainland Europe for many years and such therapies are sometimes included in the medical care system and certainly not frowned on by mainstream medicine. If nothing else - it is a great hour for "me time" which is something most of us need in our PMR-life.

[Kezy]

Many thanks for explaining that to me. I will certainly watch video, maybe ask doc and try to find a practitioner in my area. Thankyou

[mega]

PMRpro: I have just seen your interesting post regarding the Bowen Therapy. Does it only help in PMR or could it help to 'get me walking again' with GCA? Also, is it only for paying patients in the UK or available on the NHS? I have looked at your recommended site but since it's American, it didn't answer my queries.

Having had GCA for nearly 6 years and being so drained of energy during that time - passing out, away with the fairies etc. - I have taken very little exercise. I cannot get below 5mgs of steroids and I still feel pretty awful. I live on my own, have had to give up driving and live in a hilly area! I long to be able to walk normally again, even slowly but my balance is very dodgy and my muscles very shrunken. On these bare details, can you say if Bowen could help? An opinion only, is all I ask!

[PMRpro Ambassador in reply to mega]

Bowen doesn't help with PMR itself - I can't emphasise that enough. What it can do is help with what I call add-ons. There are other things that can cause back pain and make walking difficult.

As I said above, one lady on this forum had GCA only and developed back pain - she was already on a low dose of pred, may already have been off it, I can't remember now. She spent the best part of 6 weeks in bed, only able to get to the toilet using a zimmer frame, one session of Bowen helped immensely immediately although she then continued and still goes occasionally now to keep her back stable. It has helped her with other problems too.

This is a UK site,

healthnorth.co.uk/treatment...

this lady's therapist is also involved in this clinic which I believe is still offering Bowen and other therapies on the NHS via the Pain Clinic at the University Hospital of North Durham. They did a 2 year study - and found it did help in long term pain patients so extended the contract.

It is not generally available on the NHS though and yes, you pay for it, as you would pay for private physiotherapy or massage.

It sounds as if you are also suffering from a severe deterioration in muscle condition - and your GP should have arranged some physiotherapy for advice and exercises to help that. The other thing I often suggest is walking using walking poles, Nordic walking poles are particularly good as they have wrist straps that make them easier to hold. They help your balance a lot.

Some years ago some members of the NE PMRGCA support group participated in a course on Nordic walking arranged by AgeUK (or AgeConcern or the like) and made suitable for the elderly and infirm. One lady needed a zimmer frame at the start - after 6 months she no longer needed aids to walk.

Alternatively - there is no shame in using a rollator if it means you can get out and start to walk safely to build up strength. You use glasses if you can't see well - use something to help if you can't walk well. I spent 9 months using crutches a few years ago - I had suffered considerable muscle atrophy due to pred and then had an achilles tendon problem and was not very mobile at all. But using crutches I still started to go for a walk every day - it took a long time to build up the leg muscles and it was several months before I would go for a walk around the village without the crutches - they laughed at me at the hospital when I walked in carrying them - but I got there and was back to walking fair distances quite happily.

Will Bowen help YOU? I honestly can't say - but since any good therapist will tell you that if you haven't seen a change in 3 sessions, it probably isn't going to help, I really always say it is worth a try if you can afford it. If you feel you can't - would someone give it you for a Christmas present?

[Chihuahua1 in reply to mega]

I have come across this web site about Bowen in the UK webmd.boots.com/back-pain/g...

An excerpt from the page says that Bowen is not available on NHS:

"Bowen therapy is not available on the NHS. Practitioners can register with the Complementary and Natural Healthcare Council and you can check whether a Bowen therapist is registered with the Council by searching the register. It is important to choose a qualified Bowen therapist who has undertaken all the necessary training to understand the theory and practice of Bowen therapy.

"

Hope this helps

[PMRpro Ambassador in reply to Chihuahua1]

It has been available on the NHS in the NE via the pain clinic at Durham hospital! It was still part of what they offer last year.

[mega in reply to Chihuahua1]

Thank you, Chihuahua that has made it crystal clear. It doesn't surprise me, of course but I'm grateful for your efforts!

Mega

[mega]

PMRpro, thank you for spending time on such a comprehensive reply. Since my problem is GCA 'only' I doubt Bowen's would be of much help to me, unless I developed a similar condition to the lady you mention with the severe back pain - I, thankfully, have very little pain.

I'm sure you're right in suspecting it is my muscles which need 'reactivating' but my GP simply ignores my complaints that I can no longer trust myself to get out of the house because my balance is not reliable. I can manage, slowly, if I have the arm of my 6'4" son but he can't be here all the time! I was on the verge of getting a walking stick but a rollator would be a better choice I'm sure, because if my son drives me to the supermarket I can manage with a trolley. I just have to overcome my vanity, even though it is not the best time of year to start, either!

Having said all that, it is my zero level of energy which is my biggest problem. If I'm sitting in a comfortable chair chatting with friend/family/or GP I am 'normal' and yet, particularly in the mornings, I cannot manage more than 15 minutes of ordinary activity without feeling I'll collapse if I don't sit down. I am not asking for a response from you on that, I am just so damned fed-up with it. I shall definitely tackle my GP about it!

Thanks again for your thoughts.

[PMRpro Ambassador in reply to mega]

Don't misunderstand what I said? The lady I told you about has only EVER had GCA. The back problem was something else, not PMR. And Bowen helped her dramatically. I have PMR - but I have other problems - Bowen has helped with them too. I didn't have anything like the pain she did. Bowen is also wonderfully relaxing - so worth it for that alone!

But yes - I hear what you are saying. And I really would encourage you to bite the bullet and get a rollator. I recently had a few long distance trips. In May I flew alone to Vancouver from Munich, dead easy, dropped off at the airport terminal, relatively short walk to check-in, another short walk to the gate and loads of time to do it. Coming back the plane docked at the furthest away gate - and the baggage reclaim was at the furthest carousel on the place! Then it was a really short walk out to the terminal. But I was tired and still had a long day. When we did a similar trip in June, flying to Chicago and Calgary we had a relatively short (just under 4 hour) transfer in Chicago. I don't know if you know Chicago airport - it is HUGE! The more I thought about it the more concerned I was so I requested airport assistance. At Munich we parked at the nearest long term carpark - and walked and walked! It was awful! The next bit was short luckily! But at Chicago I was met at the plane - the transfer was a doddle with one and a half hours to spare! No standing, no walking. The rest of the trip was no bother and I was able to enjoy what we were doing. And that is the point.

As I said before - it's like using a hearing aid or wearing glasses. No different. But it allows other things to be possible. It isn't that you CAN'T, it is that it is difficult. If you use an aid you will be able to do so much more - and that is good.

The 15 mins and you are going to collapse? Do 7 mins. Rest before you get to that stage. Do another 7 mins. And rest. Rinse and repeat. You will find that you can do more - and as you do more you will slowly get fitter. It isn't going to happen overnight - but it will happen.

[mega in reply to PMRpro]

Thanks again for your response PMRpro. What an awful journey you endured to get home from Vancouver. I know Chicago Airport well - well my bit of it! One of my biggest regrets with this horrible condition is that I haven't been able to pass through it for nearly six years. My son has been in America for 27 years (not all in Chicago), is married to an American and has two very lovable young sons who I have been unable to see for those six years. In fact the symptoms of my GCA started in Chicago - I used to visit them a couple of times a year. It will be my first port of call if I am ever free of GCA/steroids. If I am still a bit doddery, I shall certainly avail myself of their services. This is O'hare presumably? (You certainly are a bit of a gadabout aren't you? Long may it continue,)

I shall also try and discipline myself to not push the barriers no matter how I feel but try the 'little but often' approach. Many thanks for your encouragement.

[PMRpro Ambassador in reply to mega]

Why can't you visit? Plenty of us travel with PMR/GCA/pred - DL has been to New Zealand. Others from Canada have been to India, spend months in Mexico or other warm climes.

And never mind "if I am a bit doddery" - I really am NOT at all doddery in any sense - but there is no point wasting energy unnecessarily. Keep it for the fun stuff.

[mega in reply to PMRpro]

Really, I was not suggesting YOU were doddery. I also cannot 'waste' energy I simply don't possess at present. I do not feel rather unwell, I feel totally debilitated still and absolutely know I could not travel to Chicago until there is more improvement. What with two heart conditions, I probably couldn't afford the insurance anyway!

I get the impression, with your citing of other 'adventurers', that you may consider me a bit of an elderly snowflaky quitter. Not so, I can assure you, as would anyone else who knows me. As I said from the start, I am just so fed-up with feeling as I do.

I do thank you for your time and attention, though, and I'll send you a postcard from Chicago, via this site, when (or if!) I get there.

Best wishes, Mega.

[PMRpro Ambassador in reply to mega]

I didn't imagine you were - I was saying that, whether we are fairly/relatively fit or not, using the assistance that is on offer is no bad thing. Some of the people I mentioned didn't think they could do the things they had planned but by using what was available as aids they WERE able.

I don't consider you anything - but a lot of people are unaware of what is out there to help. And all of us feel pretty cheesed off with what we have lost - I was merely hoping to encourage you perhaps.