Frustrated !!

Hi Fiftiesgirl,

I'm so sorry you're having trouble with your hands :cry: . Apart from the initial pain and stiffness when PMR was first diagnosed, the two things that troubled me most early on was the total fatigue and the pain in my hands and wrists. I would often sit on the settee in the evening weeping with the pain. I would sit with my arms resting on a cushion trying to move my hands into a comfortable position. The symptoms seemed similar to carpel tunnel and when I asked my Consultant about it she said that she had other PMR patients who also suffered from the painful hands and wrists. All I can say to help is that it suddenly went :run: and has never come back. I found typing, driving and cooking difficult so I know how hard it is for you.

Take care

Lizzie Ellen

Hi all!

Granny Moss - you probably missed a thread we had a while back where several of us complained about hand and foot pain. My hand pain was in a few of the finger joints and was a sharp stabbing pain if I tried to bend that joint and sometimes it felt as if the joint got stuck and I had to help it back to where it was meant to be! I also had pain and aching in the base of my thumb. After some time on 15/12.5 mg/day steroids - a couple of months - I realised that had improved. I also had pain in my feet that felt like standing on sharp pebbles and as if someone was squeezing them when I stood up. It improved a bit once I got moving but not enough to say it had gone. These are the things that come back first when I try to drop my dose and since it makes it impossible to walk around the flat never mind anything else I go back to the old dose.

Someone said carpal tunnel - have you noted if your hands are at all swollen? Mine are and were more so before steroids. The fluid retention is probably also causing the carpal tunnel symptoms.

I found ibuprofen helped some with hand pain but it is a problem together with the steroids. I had to use my hands - I translate and type everything on the computer. There is voice recognition software so you can dictate anything you would like to write - I've never tried it though. I just gave up all the other things like washing up and cooking!!! I'd never dropped things in my life before until I had PMR. After we moved to a new house I got stuck in the bathroom once because I couldn't turn the knob - replaced that with a lever pretty quick!

EileenH

Hello EileenH. How clever of you about pebbles underfoot ! I too for quite a while, when walking had those horrible pebbles, quite painful ! Never connected them to PMR ! And the pains at the base of my thumbs ! This PMR is full of surprising factors ! And only about 2 o3 in 10.000 get it ! We get zapped from the sky...Google spyes are watching and going : There is a good one...Zap it !...... :lol: :cry: all at the same time.....hope I still keep my marbles, and carry on the fight !.....Love. Granny Moss.5nkdtq

[b:9c36ca286c]Granny Moss[/b:9c36ca286c] - You most certainly still have your marbles (plus some!)

[b:9c36ca286c]Eileen[/b:9c36ca286c] I tried Voice recognition software and it felt as though I was talking to myself :yikes: . I also developed this awfully, awfully old fashioned BBC Newsreel voice :lol: I quietly thanked the old bat :bat: of a 'commercial studies' teacher, who, with the aid of an often used ruler across the knuckles, taught me how to touch type. To this day I still can't look at the keyboard when I'm typing :lol:

Keep well everyone.

Lizzie Ellen

So wanted to use the :bat: but never had the opportunity before :!:

Hello girls....... the swelling ( knuckle area and below) in my right hand did bother me as is the first time I have swelling with the pain. I get pain in my hands quite a lot but the past two days it has been horrendous and has brought me to tears.... haven't known what to do with myself and as Lizzie Ellen ( I think :roll: ) mentioned about herself, have had it propped on a cushion on my lap to try to support it :?

Have had pain in my hands and ankles quite badly ( as well as in usual places) so good to hear ( in a way!) that so have the rest of you and it seems to disappear in time :shock:

Is the swelling I experienced 'normal' as is the first time I have it.... my husband was quite shocked to see it and had to chop up the butternut squash and other veg for me before going off to work yesterday morning :roll:

The night sweats ( and day sweats) bad at the moment and groin pain driving me to distraction.....

BUT a friend arrived just before lunchtime...... made sure I was wrapped up warmly in layers.... and took me in her car to our local wood where we had just a slow toddle to look at the snowdrops :D We then went to the local garden centre to have some lunch.... had to have soup otherwise she might have had to resort to cutting my food up for me :lol: :lol:

So feeling much more upbeat having seen the snowdrops and buds appearing on the trees.

Mrs O..... looking at the support group info the nearest to me is Peterborough and only a phone number..... not used to 'support' groups so not sure how they do things and whether I needed to 'join' or just another PMR sufferer at the end of the phone and prepared to chat?

I am so pleased all you lovely girls are here..... only sad we have to be here at all :roll:

Hello again fiftiesgirl

The PMR support groups are dotted around the country and usually arrange meetings every so often for those who want to go along and have a chat with other people with the same condition who understand exactly what you are going through and the experienced ones with the t-shirts :lol: will be able to pass on lots of helpful information. Our mrs K runs one such group in the Northeast which you have probably seen mentioned and she will be able to give more details of exactly how they are run but I know that some of them arrange speakers such as physiotherapists, pharmacists, etc at their meetings. Why not give that Peterborough 'phone number a ring and introduce yourself then any time in the future when you are unable to type because of your hand pain then at least you will have a 'lifeline' so to speak. Also, you are most welcome to ring me at any time in the future if you feel like a chat with someone you already know, albeit virtually' :lol: , in which case you would just need to e-mail me via this site and I would happily provide my 'phone number. :D

I bet that walk in the wood amongst the snowdrops followed by lunch out with your friend was a real tonic! We all need to give ourselves those special treats.

MrsO

fiftiesgirl

Gill who runs the Peterborough support group is quite special.

Gill has recovered from PMR, but feels so strongly about helping others after what she experienced is why she runs that support group.

I would say to you give the number a call - you do not have to make a commitment just see what is on offer. If your like me, my calls are free and the old saying goes, 'nothing ventured, nothing gained'.

Hallo Fifties girl and so do sympathise with your severe pain. It really does get to you when you have to ask someone to do the everyday tasks that used to be just part of the automatic settings. As you can see from here, all of us have been there and do come back but, at the time you find yourself wondering if you ever will. It really does help to let off steam here and I can see you are not without sympathy at home. Do what you can ( or even a bit more ) when you can. I have feared depression due to PMR/steroids and I have found that sensible pushing of the possibilities does help in that department.

I see you mention groin pain. May I ask, is it one or both sides? This is not an idle question.

I have had hand pain, too but tomorrow am about to make my second batch of marmalade which feels like a great achievement. My sister usually makes lots and is generous but has a broken wrist so I ahve to try and have surprised myself.. The ups and downs are hard to cope with .

Sleep well if you can and good luck. BettyE

Hi to all suffering hand and foot pain,

I have never had pain in my hands with PMR but I did have horrible pains in my feet which made walking downright unpleasant. My solution was to start taking Magnesium. Apparently many of us are deficient in both Magnesium and Vitamin D and in the US a lot of doctors are recommending that everyone take both. I've been taking extra D for years after I was tested and found lacking in it. Magnesium has been mentioned on this site (by EileenH?). It relieves muscle pain, helps alleviate pains in the feet and hands and, increases the absorption of calcium, amongst other things. It relieved all my foot pain and the pain has never come back. I take 500 mg a day. Might be worth a try. :D

Jill

Hi Gill

That's interesting reading your post about magnesium as some time ago I read an article advising that anyone deficient in Vitamin D should also have their magnesium levels checked as this is needed for the absorption of Vit D. I did e-mail our mrs k at the time as she was commencing Vit D but I'm not aware whether she had the magnesium test or not. It seems that you have proved the advice to be correct as you have had complete relief of your foot pain. I am about to have a Vit D blood test but up to now I have relied on foods high in magnesium including brazil nuts and sunflower seeds etc. It would be nice if we could rely on lots of sunshine to help with our stores of Vit D but that's in an ideal world - we are having such a dull, dreary and cold winter and hope you're faring better in NY!

MrsO

Mrs O--Your weather does sound bad this year. We live well north of New York City (180 miles) but they have received the major storms this year. We do have snow but snowy winters tend to be bright and sunny and with the reflection off the snow the house is full of light it is really beautiful. Winters with less snow are more cloudy.

To follow up on the Magnesium I think it has helped with my calcium absorption and/or with the cramps because I used to get cramps in my legs too and now I don't. I would have to take more calcium than my usual 1200 mg in order to stop getting cramps. That is no longer a problem. Having said all this, swollen joints in hands can be the sign of something more serious. Even after four years with PMR my rheumy still checks out every joint every time I see her. What a disease.

Jill

Dear Mrs K - Please, how and when does one KNOW when this wretched illness is over ? How can I tell ? With Preds, I am fairly OK. So, to know the answer, should I stop taking Pred ? Of course this is a stupid question, I now realisa. Preds must be fased out slowly and with care. But When will I know that the PMR has burnt out ? Is it a question of time ? You say, Gill, of Peterborough is cured. Oh, how can we tell when we are cured ? :cry: :? You can tell me off on this.....I probably deserve it... :oops: Granny Moss :love:

Apologise for spelling mistakes. My keyboard was made in China, and tries it's best...... :roll: Granny Moss :lol:

Oh Granny Moss

You are being impatient Im afraid !!! I think the average is 2 to 3 years

With my first bout I had gone from from 20mg to 1mg in a year and they kept me on that for another year and checked my bloods every 2 months to make sure nothing was happenning I was feeling fine my bloods were both about 2 to 3 for that year and that was that

With this bout I am 2yrs 3 months down the line on 3,5 and because of the flare up I had I will IF all goes according to plan be off steroids sometime much later this year which will then be 3 years so quite different from my first bout Which is why Mrs K ( I think says how long is a piece of string ) My Dr has people who are on a maintenance dose of 5mg permanantly to just keep the inflamation under control

A friend I had lunch with yesterday knows 2 men who have it one is 60 one is around 70 and they have both had it for over 3 years From what she says I am not convinced they look after themselves that well !!!!

When I feel down I just think about people I know who have a lot worse illnesses which are life threatening and PMR isnt

So just try to look after yourself and dont get too stressed as I know my flare up was caused by stress

Best wishes

Mrs G

Granny Moss - it's not so much \"cured\" as that the disease process has \"gone into remission\". It used to be said by some doctors that PMR burned itself out in a couple of years. This idea is being reviewed as more and more patients are being found where the symptoms last longer than those 2 years. In some patients it does disappear within a couple of years (about a quarter) whilst about a half need at least the two years and up to 3 or 4 years. The rest need longer, some even needing a low dose of steroids for a much longer time.

Jill asked where I got the figures from - it must have been a text book with a review article and of course I can't find it now! However, I have found a few review articles over the past few days and it seems that there have been several smaller studies which came up with similar figures for the length of time you needed steroids so someone pooled them all for a review and looked at what was found. They can't be pooled totally as the criteria differed from study to study but there was this general agreement about this split.

PMR and GCA are said to be at opposite ends of a spectrum and the accepted wisdom is that you can have \"pure PMR\" and \"pure GCA\" where you only ever have the symptoms of one or the other. The logical extension of this is that there must be cases in between. It is very unusual for patients to present with certain symptoms when they have PMR - the claudication (pain in muscles after repeated movement) you have heard of in the jaw for temporal arteritis is an example - however, the first thing I really noticed was severe pain in my thigh muscles and that happened from one day to the next. I'd had some shoulder stiffness and morning stiffness but as I've had a back problem for many years I had put it down to that.

The only way to tell if the PMR has burnt out is to proceed with your dosage reduction, a small amount at a time. One of the things found in the review article was that as long as the reductions are small there is a better chance of getting off steroids altogether. Above 10mg per day there are fewer problems with reductions for most people. Just around 10mg/day or slightly less there seems to be a threshold where many people find their symptoms return and the recommendation is for any reduction to be a maximum of 1mg at a time, if necessary 0.5mg at a time. If this small reduction causes no problems after a few weeks, the next reduction should be attempted. The next sort of threshold seems to be at 5mg and the same thing applies there for the reductions.

Several of the papers included in the review were of the same opinion - trying to get off steroids quicker than your body can accept is associated with higher levels of relapse and the more relapses, the more difficult it is to get off steroids altogether. Whether that is because the disease is in a different form in these patients making it more difficult to achieve remission or whether it is because the too fast reduction has an effect isn't known.

Anyway - must go and watch Murray :lol:

EileenH