home from hospital after blood clot.

Hello Amy cakes

Glad you are feeling better today What you have had is so much more major than PMR I expect you do feel tired I am glad to hear your husband is supportive mine is great and it makes all the difference

To everyone else I was just thinking today ( when i was doing something exciting like mucking out the horses !! ) that we shouldnt necessarily put every pain we have down to PMR as like Amycakes it could be much more serious I know its easy to get a bit bogged down with the aches and pains of PMR and constant trips to the Dr so sometimes we can perhaps ignore something else that isnt involved with it or think I cant ask the Dr anything else or if you are new to PMR knowing whats normal or not One thing ( minor I know ) was my knee but since I have seen a physio ( well 2 as 1 left ! ) its fine and has been giving me trouble for 15months The 2nd physio put me on steps and I had started walking down stairs slightly sideways to protect the muscle at the back and hadnt realised it now Im doing it properly Im fine So Im really pleased as its made my Nordic walking and exercise class a lot easier

Mrs G

Amycakes...that is such a long time to have not seen your daughter \"in the flesh\" :cry: .

I am so sorry that this blood clot has scuppered your immediate plans, but we are all rooting for you and the important thing now is to get your own health back in order :wink:

I know it must be very disappointing for you, but hopefully the family will be able to work something out and get over to you instead.

I have some relatives on the North island, but have yet to have the opportunity to visit....definately on my \"to do\" list though.

Very best wishes for better days ahead and a full recovery :blackcat: :hug: :cool:

Love, Pauline

Hello Amycakes\"

I was sorry to read about your blood clot I hope by now things have improved a little for you what a shame that your visit with your daughter is also delayed I hope you get better soon and also get to see your daughter soon as well :cuddle:

Been offline for a few days , no phone ,no broadband, someone stole the copper wire or something ,so 6 B.T vans working in my village getting us all back in touch with the world.

Just to update you lovely people, I am feeling stronger everyday, no more real pain in my back, only when I stand too long or do too much, though I am behaving myself.It eases when I rest .Its more across my back, not like the last back pain.

Just weak jelly legs,& tired, I think I can cope with that,.

Can anyone tell me when you get to 20mg or less, does the leg weakness improve?& the fatigue?

Guess I am hoping!

Couldnt ring my daughter in N/Z because of stupid people disrupting the phone lines, but back on track now, so long phone call soon.

Thank you for your support , it has been a long time, but I will get to see her , sending my ticket refund money , so things looking up.

Hope you are all pain free today .

Amycakes.

Welcome back Amycakes and glad to hear you are feeling better.

[quote:4db6b89785]Can anyone tell me when you get to 20mg or less, does the leg weakness improve?& the fatigue?

[/quote:4db6b89785]

I began to improve around the 10 level and you do have to give the unused muscles time to recover before they feel like your legs again and it didn't all happen at once; better days and weaker days even when the improvement was underway but that's PMR all over. Celebrate the good days and remember them on the one step backward days. :cheers:

Amycakes - so glad to hear you are improving, even if slowly. It may not be the steroids giving you \"jellylegs\" although I know a few people have complained they feel as if their legs don't belong to them!

Some years ago a Scottish medical school did some work where they took a load of marines, tested their fitness on Friday afternoon and then put them to bed in a hospital ward for the weekend - just bed rest, no tests, no interventions, just bed and hospital food and environment. On the Monday they repeated the fitness assessments and continued to do so until they achieved the same results as on the Friday. It took these super-fit blokes 6 weeks to get back to where they had been!

You've been through a lot, suffered some fairish insults to your body. I think it might take a bit more than 6 weeks to get back to the starting point :roll: :lol: Don't worry - you will get there but don't try to overdo the mobilisation - get moving but don't go mad.

all the best

EileenH

Hello Amy cakes

Oh isn't it frustrating when you are cut off from the internet for any length of time - whatever did we do without it!!! :roll:

It's so good to hear that you are feeling stronger and that the pain is improving. It's a frustratingly slow process but your body has been 'violated' somewhat and with plenty of rest, you should carry on improving, albeit slowly.

I was one of the people who Eileen has described as feeling as if my legs didn't belong to me for quite some time. Even when I got down to the single figure doses I would have some days when they felt quite good and others when they didn't feel like mine! My solution was to have a daily walk even if it was a bad day and I could only do 5 minutes.

However, your legs could just be weak from what you have been through recently so with a bit of luck you may slowly find a big improvement - I do hope so.

Just remember not to overdo it when that energy does suddenly creep back.

Very best wishes,

MrsO

Hello Amycakes

I am glad to hear you are feeling better

Im sure it will take you a long time to feel fit again I had heard something simliar to Eileen that after a week in hospital it takes 12 weeks to get back to fitness again I am sure just doing a bit each day will help

Im not sure at what doesage i started to not have the exhaustion associated with steroids it probably was around 10mg I never had jelly legs I would said I had dragging ones where they didnt lift as high as I would like so I would trip unless I looked where I was going

Im sure you will get your fitness back eventually I am just getting back into exercise after at least a years gap and I am getting there

Feel lost without the internet When we had to have a new laptop and had problems with the internet for a week it was awful!! So I went to my local library !

Best wishes

Mrs G

Thank you so much for your info, much appreciated.

Have taken on board all you have said, & I am accepting that it isnt going to go overnight, & yes I guess a week in hospital didnt help my weakness anyway, but good to know I will get there eventually.

Going to drop to 35mg tomorrow fingers crossed.

The sun is shining & I am going for a bone scan today, hoping that will be ok

Still resting in the afternoon , in fact I quite look forward to getting my head down for an hour.

Cheers to you all

Amycakes.

Hello Amycakes ! Do hope you will continue with the feeling better factor, day by day. It is such a \"miserable\" illness to have !. It is so easy to go into the depth of depression. It makes hard work of all the things we were able to do without giving a single thought. Here we are, all trying to make each other feel better, although we know that it takes more than simple words, to carry on day by day, and pretending so desperately that this PMR will soon be gone.....I feel so useless at times, and confused, because my life has changed so much. All the things that I now know I cannot do. It takes me ages, with my shaky hand to write a simple letter.

Yes, I can use the printer, but I like to write letters by hand. Is that too much to desire ? And all the other small things that I cannot do. Like opening a door with a round knob....or lifting a saucepan with one hand....it all mounts up, and the frustration can be upsetting. Ah, yes, and getting tired so easily....That is why I must end here... :roll: and go and have a few moments rest, before I can start cooking But we cannot live of fresh air alone,....especially my Old Man !..... :roll: :P

At soon, love. Granny Moss :rose:

Granny Moss - round knobs - YES! In the early stages of the bad PMR I got stuck in the bathroom of the new house because of the door knob. That was changed pretty sharpish I can tell you! :lol: :roll: Still hate locking doors - just in case! And handwriting anything more than a shopping list isn't on. Luckily typing isn't a problem.

EileenH

Yes so many things that used to be easy are a major effort but we all keep on doing them, don't we? Quite right, too. Looking around I know of too many who have given up too much too easily and are not better for it so keep cooking the supper Granny Moss. :fish: :flan: :redwine: :tea:

Hi All,

Had my bone scan , & although the results will be in 2 weeks , she told me there & then that I havent got osteoporosis.Thank God for small mercies!

Down to 30 mg for 2 weeks , then dropping again, so fingers crossed all will be ok.

Hope all of you are having a good day today, no pain & enjoying the lovely weather.

Take care my friends.

Amycakes.

Hi Amycakes

Just the good news you needed after all you have been through recently and how kind of the radiographer to tell you the result there and then. :D

Although you're possibly not able to do much walking at the moment, as soon as you are more comfortable a daily walk as a weight bearing exercise will really help to keep the bones strong.

I had normal bone density at the outset of treatment (60mgs) but the second scan two years later revealed osteopenia of the spine, the stage before osteoporosis, obviously due to the high dose. Apart from the daily walk which I have slowly managed to increase in length, I also eat a lot of beneficial oily fish including the bones with the sardines! Having been on very low doses for some considerable time (1mg for the last 8 months) I am hoping that my next scan in a couple of months time will show an improvement or at the very least will have stabilised.

Also, you will probably have already read the importance of having our Vitamin D blood levels checked as deficiency will aggravate bone density. Plus we are now experiencing some gorgeous sunny days and all of us with PMR have learnt to take every opportunity for a natural injection of Vit D. :wink: 8)

My very best wishes for a smooth reduction.

MrsO