Hi everyone
Has anyone else got very swollen and painful hands, I have had to take off my rings they are so bad?
This is my third time of trying to add to this page but I keep getting told someone else has your name, yes, it is me. So here goes again.
Spammy :roll:
Hi Spammy,welcome aboard,my husband has not been officially diagonosed with Polymyalgia Rheumatica, he is waiting to see a Rheumatologist, But i can tell you that he has complained of sore hands stiff and swolen.So Spammy your not alone. You will find everyone very helpful on this site. If you have a problem you will get all the support you need, just as i have.Everyone is so friendly and they have helped me get through my confusion of this illness.Speak to you soon Margaretann
Hi Spammy!
Yes - I have various sorts of pain in my hands!
While the PMR was active before diagnosis, two or three joints in my fingers got really sharp pains when I bent them, bit like something sharp being stuck into them and was bad enough to make me squeal! The joint next to the nail of both index fingers has knobbly bits like with arthritis. The joint at the base of my thumbs is often painful and the ache runs down the inside of my wrist - this pain is now actually the first to reappear when I am trying to reduce the steroid dose and I can only liken it to toothache in my wrist! My hands feel swollen - some of it is from the weight gain that happened before diagnosis because I couldn't do as much exercise and spent every afternoon craving sweet carbs and giving in! But some is from the PMR, I'm sure. On a bad day it hurts to shake hands with someone, holding a cup or glass is difficult and doing housework is awful. I also feel seriously clumsy - I never used to break things but I do now. Holding the nozzle on the vacuum cleaner makes my hands ache for ages.
There's more - but you don't need any more for confirmation do you!!!!!!! My husband is throwing me off the computer as he wants to switch off the electric!
cheers from a VERY hot Italy ,
EileenH
Me again!
I also have a lot of pain in my feet when the PMR is bad - feels like standing on sharp pebbles for want of a better description and is worst at the beginning of standing after sitting for a while. Improves a bit after I get going but is always there - bit like the stiffness I suppose.
It was the hand and foot pain that I went to the GP about originally and both the rheumy and \"musculo-skeletal specialist\" (aka, a physio with an extra piece of paper and suffering from \"I'm wonderful\" syndrome :wink: ) I saw were most dismissive. Apparently if you can touch your toes there can't be anything wrong with you! :roll:
It's actually been the hand and foot pain and the pain I had deep in the hip joints that was the most disabling part of the PMR - I couldn't stand or walk without considerable pain and I think that made the fatigue even worse. The hip joint pain has gone altogether, the feet are mostly OK though I can't walk for long without a fair amount of discomfort afterwards and the hands are variable!
Anyone else have foot problems?
EileenH
Hi there fellow suffers. Thanks for your comments about my hands.
I am not new to this site but have not added anything since last year.
In January I went into hospital with two prolapsed discs, I was not sure if the pain in my back was due to the PMR or my spine. I spent three weeks in hospital and came home unable to do stairs so had to stay upstair for 2 weeks until I could walk down stairs as we only have an upstairs toilet.
I gradually moved on from a zimmer frame to walking sticks. I wondered if the pain in my hands is due to having to walk with crutches and then sticks because my hands have gone a funny shape, swan neck was mentioned.
I had recently increased my steroid to 10 mg but it did not make any difference so my doctor told me to reduce them again so now I am all aches and pains. I once got down to 5mg from 20mg over about 18 months but have had to go up and down the last six months. I have never had such bad hands in all the last 2 years. It's two years in August since I was diagnosed. When I first had it my hands were very painful in the mornings but never so fat and stiff. I had and xray on them on Friday.
I sat in the sun this morning for 1/2 hour as suggested on this site, something I never do. I wonder if anyone has ever thought about a diet, I know fish is very good but is there any food to avoid?
My husband has just said \"is there anything you would like to do?\"
my reply was: yes, I would like to run around the block. Haha!
Keep cheerful
Spammy :lol:
Spammy: when you say you went back up to 10mg but it didn't make any difference what do you mean? Have you seen my post recently about remaining at a steroid dose that makes you comfortable and not reducing the steroids just for the sake of reducing them? All they do is control the symptoms to make life worth living - there is no cure for PMR so that is the best you can have. However, there seem to be some doctors who want you to reduce the steroids and get off them in 2 years as they are under the impression that PMR burns out in a couple of years. It doesn't necessarily do so and there is some thought that going down too quickly and the PMR symptoms flaring in the end actually means more steroids and at higher doses.
The other thing that occurs to me is - is your PMR actually maturity onset rheumatoid arthritis appearing? You don't have to have a positive rheumatoid factor and in the early stages of RA the steroids will also relieve the symptoms - the problem with just using steroids is that they are not like the DMARDs (disease modifying anti rheumatics) so the joint damage isn't controlled or slowed down. Higher doses of steroids are also used in RA flares. Or another form of arthritis - has anyone said \"sausage fingers\"? Or are they not as bad as that?
Certainly, doing anything like you have been with a zimmer frame and walking sticks would finish me totally - the sore hands would be the end! I can hold my ski sticks but trying to do housework (admittedly, not very hard :lol: ) still almost reduces me to tears of frustration. Holding things is still not easy although much less painful than it was.
BTW - have you read MrsO's posts about an anti-inflammatory diet? The oily fish bit is probably the vit D and omega 3s that is in it. I am about to try upping my vit D intake but you can't buy it OTC in Italy so I have to wait until I'm somewhere else to get it - I know, tinternet!, but I wouldn't trust anything to the Italian postal service! In the USA they now recommend an intake of 2000 IU per day (which is about 4 times the level in the UK) and the new upper limit is 10,000 IU. They have vit D fortified food there which Europe doesn't so they get more anyway but normal diet isn't enough to get that much - unless you are an Eskimo and eat oily fish 3 times a day every day!
I don't eat wheat - I'm allergic to it (itchy, itchy itchy and hives) but I can't say I think that makes much difference. That's pretty restricting so I'm not particularly willing to eliminate much more! Maybe we should start a thread on dietary suggestions that people have found helpful or otherwise so the info all comes together?? What does anyone else think - any suggestions?
hope things improve,
cheers for now - from a cooled down Italy (3 days at 35C, now 23C after a bit of rain, bliss!!)
EileenH
Hi Spammy and I'm so sorry to hear of all that you have been through with prolapsed discs. I know only too well what horrendous pain you will have suffered as I have spondilolisthesis of the lower spine where the spine itself has slipped forward trapping nerves and discs at different times. Like you, I have also suffered some confusion as to what pain is due to PMR and what is due to the slippage. I do hope that you are fully on the mend with regard to your spine now as PMR itself if enough to cope with!
Re your hand pain, have you got any swellings appearing on the bony nuckles near the tops of the fingers - these are known as Heberdens Nodes and can be an indication of osteoarthritis. Over the years I have experienced bad pain in my fingers each time a node was about to develop and once the node established itself the pain eased. Some years ago I had bad pain in the thumb joints and was unable to even lift a cup. I was off work for months and the local physio department made plastercast splints for the thumbs. After a lengthy period I slowly returned to being able to use my hands normally again but even now I try not to spend too long on the computer keyboard. Bizzarely, each time I have had a flare in the PMR symptoms and inflammation and had to increase the steroids, the very first warning sign has been in my thumb joints!
With regard to diet, I (and one or two others on here) have discovered that we have experienced worse symptoms following a patch of over-indulgence such as over Christmas and Easter. One of the foods that I have found to aggravate has been the gammon over the Christmas period. Another food which severely aggravated my thumb pain amazingly was certain ice cream such as Magnums. I can eat organic ice cream without any problems. So for the last couple of years, I have avoided any processed foods (meats in particular) and try to stick to a mainly organic diet to cut out additives and too many pesticides, and as little sugar as possible. I eat oily fish several times a week for the Vitamin D benefit and to that end at least we now have the sunshine although I am finding the intense heat in this area near Heathrow at present to be very debilitating.
Spammy, I hope something here will be of help to you and that you will be able to \"run around the block\" sooner than you think :lol:
MrsO
PS - I once experienced similar problems trying to enter the site and being told that there was someone else registered with my name - I contacted the moderators who kindly sorted it out for me and I'm now logged in and out automatically. Well done Moderators
Eileen - you must be psychic as you beat me to it with a reply to Spammy whilst I was in fact typing away re the diet. I omitted to include my daily beetroot as a highly anti-inflammatory food plus, of course, garlic. Please send some of your rain our way so that I can have an evening off from watering all the pots and baskets - indeed, I would relish getting soaked myself to cool down 8)
Hi MrsO!
Our rain wouldn't help your pots I'm afraid as it's more heavy dampness! However - it's dropped the temp by 10C but shoved the humidity from off-the-scale-low to something more like GB - yuk! Thought you were about to get some tomorrow according to Sky News.
I was interested by your comment about how the heat was affecting you - it's the psychic bit again! I'd been contemplating a post about that as I've had to up my steroids a bit to see if it will help as the foot and hand pain has been back the last week during this heatwave (above 25C almost every day for about 3 weeks or more and 30C for the last week or so) and now I'm beginning to stiffen up too. :roll:
stuff PMR - wish it could decide whether it likes warmth or not!
EileenH
Hi Eileen, Margaretann and Mrs O
Thanks for your comments, there was also talk of maybe it was carprol tunnel(not sure if spelling is right) in my wrists. Yes the fingers are like sausages, can't close my hand, I can't turn on taps, open bottles or doors.
I used to do a lot of needlework and paint water colour pictures. If I did a painting now it would be like a Monet.
To add to my misery I have had Psoriasis for the past year, I did wonder if that was anything to do with all the drugs.
It's good to have a moan.
Spammy
Hello again Spammy
Now that you have mentioned you are also suffering from Psoriasis it is possible that this is linked to your hand pain as there is a condition called Psoriatic Arthritis. I remember during my first ever visit to the rheumatologist over 4 years ago that in trying to determine my illness he asked \"have you ever suffered from psoriasis\"? If I had, then no doubt he would have diagnosed psoriatic arthritis. I'm certainly no expert but as this was my experience I feel that this is now sounding a high probability with you. Perhaps you could try Googling and check out the symptoms. You never know you might even diagnose yourself :doctor: I certainly did with GCA! Do let us know how you get on and very best wishes.
MrsO
Hi again Eileen
Yes, 31 degrees here yesterday and as for the humidity.......I'm fed up with a wet head, water dripping down the back of my neck (yuk!) and swollen ankles by the end of the day. Never thought I'd feel like this when I was praying for the summer to come in the depths of our freezing winter. I had several days of severe stabbing pains through the side of my head last week which I put down to neuralgia as a result of the fans (but lurking in the back of my mind was GCA!) Happily, the pains have subsided in the last 3 days - I guess that because of GCA there may be a bit of a sensitivity there to the fans. And, yes, I'm not surprised, but sympathise, that you have had to increase the steroids to cope with worsening stiffness - it may be a similar story with others suffering the same temps......the heat is probably drying out all our joints and I'm hoping that upping the drinking water is of some small benefit. Just love your sentiments re PMR :lol: Hope you unstiffen again soon!
MrsO
Apparently if you can touch your toes there can't be anything wrong with you!
Well I can touch the floor so should be able to run round the block. I wish.
I just wish it was possible to identify which pains are which. I have never had pains in my hands or feet but at the moment have bad pain in my left groin. PMR? Do I need a hip replacement? I seem to remember someone else having groin pain. Did it go? was it unrelated to PMR?.
For about two weeks I have felt better than for a long time. Plenty of energy, little pain.But for a couple of days everything is too much effort. Is this the hot weather? I never did like too much heat. Perhaps I should move half way up a mountain like Eillen and her husband.
Cooler this evening so perhaps more comfortable sleep. Good night all. Sleep well.
Spammy: Are you under a rheumatologist or (just) being looked after by a GP? If you have psoriasis, sausage fingers and PMR-type pain then psoriatric arthritis is a real contender and needs to be excluded (or not). It is possible that it started with PMR and that has masked the change. If you are under a rheumatologist and they haven't considered it - either jump up and down (gently) or ask for another opinion. Didn't suggest it before as I felt I might be jumping the gun until you mentioned the psoriasis.
BettyE - deep groin pain, like needing a new hip? Yes - that was me. Thank goodness it went with the steroids! Up the dose marginally for a few days maybe? I suspect it may be a result of muscle tension from the PMR as I could keep it liveable with by physical therapies - physio or Bowen. Half way up a mountain is still seriously hot (35C) this year but has been very dry until tonight (humidity off the scale - lo, now 70%) but it's only the last couple of days I've begun to feel yuk. Dry and hot, but not too much, seems called for! Moderation in all things...
Read something the other day about how PMR modifies and moves - nothing like being unpredictable is there? Get used to one thing and the goal posts get moved...
Talking of goal posts - what a pathetic final!
good night all,
EileenH
Hi Ladies
Thanks for you comments, I looked on the internet at psoriasis arthritis and I can see what you mean. I have just come back from having another blood test, seems that last one was missplaced or miss read, so got called back. When I go back to my doctor for the results I will ask him about the Psoriasis Arthritis.
You asked about knuckles, I haven't got any knuckles now. I was always well covered, but after the trouble with my back I lost two stone as I was told to loose weight.
:lol:
Spammy
hi everyone
I too suffer from psoriasis but since taking pred it has almost cleared up apart from the very bad patch. I also have hayfever and was told I propably wouldn't get it. now I have which has baffled the GPs and took me ages to get some pills for it. hey ho must say my PMR likes the heat but not the humidity, sweat like a pig
Koukla
Hello Koukla
I'm sorry to hear you now have hayfever and are \"baffling\" those poor GPs! I have a neighbour who gets relief by taking daily spoonfuls of locally blended honeycomb starting in the few months just prior to the hayfever season, local because it is that pollen in your area that primes your body and then reduces the allergic reaction during the season. I also remember reading an article recommending this therapy some years ago. Just thought it might be worth a try!
Very best wishes,
MrsO
Yes. I am under a rheumatologist at the local hospital, I am due to see him again in October but in the meantime he left me in my own doctor's hands.
(as his letter to my doctor reads)
This afternoon I have held an ice bag on my hands, and it does help but it's not gone completely. But then again I do usually feel better after 5 pm.
Spammy
Spammy
I was talking today to a fellow sufferer of PMR about the hands problem as she is suffering as well.
Luckily another of our group had had the same problem and told her that her Consultant said it was from the steroids and sometimes you got a form of Carpal Tunnel syndrome and he had given her an injection which had cleared it up.
My friend is seeing her Consultant on the 21st of this month and her GP has advised her to raise the matter with him.
I will let you know what happens.
If I forget (Crafts) all of you remind me after the 21st
Hallo again Spammy
Hope the hands are not bothering you too badly.
I managed to speak to my carpal tunnel ex sufferer this morning and pass on what she told me.
She used to be a florist and at the time of her CT problem was a very keen gardener and still is.
Her symptoms were in both hands. Pins and needles and very painful and persistent aching which was only relieved by raising her arms over her head . ( Not an option for many PMR sufferers! ) A cortisone injection proved useless and she opted to have both hands operated on at the same time.
She stayed in hospital overnight and said there was instant relief from the pain. Back home she obeyed instructions to keep both hands raised. Supported on her chest, I think, but it sounds awkward. On no account was she to touch the dressings before stitches were removed. She was given a veterinary examination glove to enable showering. ( I would advise anyone to find out where to get a couple of these case of need. A kind neighbour who is a cowman gave us two when a member of my household had a broken arm )
After the stitches were removed all returned to normal within days rather than weeks and there has been no further problem. This must all be about fifteen years ago so good news.
Do hope you get relief whatever yours turns out to be. Painful hands are no joke and depressing when it stops us doing so many everyday chores without suffering.
Best wishes BettyE