Obviously the Pred is working well for me. I am almost pain free with slight stiffness in the morning.
Today I actually feel like my old self with energy and willingness to do household stuff. Something I have not felt like doing for a few years to be honest.
So today I am going to clean my patio while the weather is nice and hope that it is not to much for me.
I have pegged towels out already with no achy arms for the first time in a long time.
So have a good day everyone and hope you are all coping and getting better like me
Written by
Sue8
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22 Replies
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Good morning Sue,
I hope you feel OK after all that work on your patio.
I put the hose on my plants yesterday afternoon. It was far to hot to be dragging buckets around.
Not too much work now. Delegate. Yes that's the word. Get the kids to help. Bribe them with promises of their favourite grub.
I kept stopping and starting pacing myself and having a snack in between and water to keep my sugar s level. Took me most of the day but is done. Hubby moved the furniture back last night.
Got a little stiffness in one side of my neck this morning but nothing to much.
I have had a brilliant week, feeling more full of energy than in the recent past. Until yesterday! I suffered with the feeling of indigestion all day, extra strong mints didn't do a lot of good. I was back to my old lethargic ways. Had a good night's sleep but couldn't wake up this morning so it was nearly 11 a.m. Felt quite energetic for a few minutes and then subsided to wanting to sit down all the time. I haven't started on the AA Once Weekly tabs yet. I think I will write to my Dr. and ask her about the possibility of having a scan instead. All this might be due to the heat of course. The older I get the less I like it.
I have never liked the heat give me the Autumn anytime. I have gone down hill today also for some reason. My neck and left arm and I am really struggling. Probably the after math of doing my patio yesterday.
The indigestion could be caused by pred. Feeling tired out can be caused by the steroids and also by PMR. All you can do is rest and try to take care of yourself until you feel better.
Personally, if I had stomach problems, I wouldn't touch AA. I have been prescribed Omeprazole to protect my stomach from too much acid that can occur with pred. Ask your GP to review your condition and I think you are right, you should have a scan before it is decided whether or not you need AA.
Best wishes Pats.
Hello Sue8
Glad you are feeling better.
I managed a 6 mile walk on holiday last week and felt fantastic, did about 12 to15 miles altogether in 4 days.
Then felt wiped out all this weekend, all I could do was sleep!
I think that on good days we feel really really good, get all fired up with tons of energy do loads of stuff - and then crash out !!!
I don't know what the secret is to keeping on an even keel, I am really tired today too, will have to learn to pace myself a bit more.
Like you I am looking forward to the cooler days - I actually love a rainy day!
Wow 6 miles, I did the race for life in 2009 and that was a killer.
Yes deffo pace yourself. I have not done a lot at all today but am exhausted. I had some icecream so I think it upset my diabetes.
in reply to
Hi Kazzy,
I Iike the cooler days too. I think you have done so well to do so much, but I feel I have to put the dampers on your exercise. Pleeeeeeeeease don't overdo it physically. I believe that you are only a few months into your illness and therefore approaching the more vulnerable time in PMR. Many sufferers have a flare on the lower doses. This means going up to a higher dose again. Try to keep in mind that PMR, although it is painful and debilitating, causes very little damage in the long run. However, steroids taken long term, can be a source of much damage to our bodies. The trick is to keep ourselves healthy with moderate exercise, an appropriate diet and rest.
Personally, I want to get off this devious drug with all it's "pay back" attitude.
I really hope that I have not upset you. I realise that you must be so proud of yourself. For a few days you had your former life back. How we all yearn for that feeling.
Love Pats.
in reply to
Thanks Pats !
Will take on board what you have said, and no you have not upset me!
I need the exercise to keep my weight loss going , before I got PMR, and on 5th January this year I weighed in at 21 stones 5lbs , which as you can appreciate was horrendous and nearly as bad as PMR in it's own way!
Starting the steroids devastated me as I was sure that my weight would then just go up and up!
With loads of help from fantastic people at Slimming World, (and with my Rheumatologists blessing) I have managed to lose so far, over 3 stones, but diet alone does not shift the weight for me.
It is not easy, I am the main carer for my Daughter who has severe learning disabilities, and I have to be as healthy and active as possible for her. I do get my rest though!
I also have quite bad damage to my balance and co-ordination, and permanent dizziness, due to contracting a virus 8 years ago, so life was a bit tricky before PMR too - and I suppose I am just used to battling on now!
I have had a PMR flare already, It wasn't much fun and my Consultant doesn't want to increase my steroids - which I am in agreement with, I am in some discomfort most of the time, but it's not unbearable, I have seen a physiotherapist at the hospital, and have some exercises to do too.
Thank you so much for your concern, it really is good to know that you care!
xxxx
in reply to
After reading your reply I feel rather ashamed. You have so much to cope with and are doing a valiant job. My life is easy compared to yours. You carry what life has thrown at you with no complaint and you are doing so well. Just carry on as you are. You know exactly what you're doing.
The next time I feel like whinging, I'll think of you.
Pats.
Hi Sue,
You say the heat effects you. This is my opinion why that is so. PMR causes inflammation. PMR is still active in your body. An ambient temperature above what your body is used to will cause a slight rise in your body's temperature and give PMR a wonderful opportunity to flare. Don't think you are on your own here. I also cannot take the heat now. If it is too hot, I feel myself begin to wilt. I feel very weak and I know I have to rest. If I take fluids and sit down for half an hour or so I feel OK again. The feeling of complete burn out goes away.
What we also have to remember is the continual input of steroids to our system. Often I have wondered which one is causing the problems I have as I drop the pred. The illness or the steroid withdrawal.
Accept the side effects. They will happen. Pace yourself as much as you can, and if you feel bad don't fight it, believe me, try to rest and gather your strength, It will pay off in the long run. The last thing any of us with PMR want is to wake up "Big Sister" in our heads.
by "big sister" do you mean GCA??? Cos no I do NOT want that thank you very much.
Had a bad night last night due to the heat and pain in my neck. Managed to get up ok-ish had breakfast and now feel good apart from my left arm again. Got 3 of my grandkids today so won't be doing much in the housework dept LOL
It's interesting that people are feeling worse in the warm weather, because people with arthritis often say that they feel better when they are not cold. But - the level of humidity probably makes a big difference too. I used to absolutely love the heat, but when I had PMR, hot weather definitely makes my symptoms worse. I remember one year we went to Sicily in August and by the second day I couldn't walk at all except with a stick. The only place I had any relief was swimming in the sea.
That is interesting. Do you get painful legs also with PMR???? Just wondering cos I get them especially the last couple of days and it does feel like muscle pain.
Yes Sue, I think you can get painful legs. The pain I get is a sort of burning sensation in the muscles at the top of my legs as if the muscles are being very overworked, except they're not at the moment. Very odd.
arrr yes burning sensation, that was another ailment I went to the docs with over the past few yrs. When I was diagnosed I think the doc finally put ALL ailments together and saw the bigger picture hence the diagnosis. My legs get very restless at night time and sometimes the burning is horrendous to the point my husband can feel the heat coming from them.
Reading your comments has been really helpful information to share with my mum. My mother has felt really unwell for the last couple of days and I wasn't sure why she has been so bad. She seems to be reasonably well for week or so and then has these horrible dips - now I am wondering if the heat also affected her? She has also been complaining of pain in her legs again which she has not had for about a couple of months.
Comments about not pushing yourself when you feel unwell and needing to pace activity and rest has been a turning point for me and mum. My being able to tell her what other people with PMG and GCA have recommended has been great for her; you have experience of what works and what is best for you, more powerful than my suggesting she rests!
With the pain in your legs, does it affect all the muscles or any particular areas? Does it get worse with more activity, or do you need to gradually increase activity over time? Mum's pain seems to be along the shin bone and behind her knees, not sure if this is common or if everyone is different?
mine is my shins and backs of knees also. When they are really bad they are hot to touch. Getting good now though with the steroids. If I walk to town just under a mile away I have to rest when home as my legs are really painful
Hi Briony,
Looking back at your messages I see your mam is the one who has the illness and is taking pred. and other meds. The problem with this illness and the meds that are prescribed to control it is that there is a hotch potch of chemicals messing with what would be a reasonabley healthy body if PMR had not reared it's ugly head.
Because we are all individuals with a slightly different chemical make-up, and our bodies are in very diverse states of physical deteriation we all have our own responses to PMR/GCA and the drugs used to facilitate recovery.
My experiences are perculiar to me and this applies to all of us. I know what my health was like before I got PMR, therefore I have a pretty good idea why I am feeling bad. I am down to 7mg now, but often get aches and pains, usually not when I first get up in the mornings, but after about an hour and before the pred. kicks in. I try to take things easy until I begin to feel better. As the day wears on I usually feel better and all the pain goes. I try never to do any heavy lifting or prolonged excersise because I know I will suffer for it the next day or even longer.
As for pain, this is my take on it. Don't be suprised if you get it in other places than the muscles of your hips and shoulders. There is inflammation on the loose in your body and it will attach to any weak area you have. Some of it, and sometimes all of it will go with gentle exercise, but if you are experiencing "burn out" as well then rest, drink and take a little food. Stay with that rest until you feel youself pick up.
This works for me and, by the way, the heat is getting to me as well. I think that because our bodies are more fragile they don't appreciate sudden changes in temperature.
Pats.
Hi Sue,
I used to get pain like you have in your legs when I'd done a really hard shift at work. I realise you are not doing a great deal of leg work, but remember that PMR will often latch on to any weak areas in you body and that is why you are maybe getting the pains.
As long as you rest afterwards and give youself time to recover then I think you will be OK.
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