Pilates?
Posted , 4 users are following.
Does anyone know if it is ok to use a pilates exercise machine. I know it is very gentle and it elongates the muscles. Would appreciate any information. Thanks and a very happy new year to everyone on this site.
1 like, 47 replies
yvonne45604 pat38625
Posted
After all kinds of meanderings in the system in Canada I finally started on 30mgs of Prednisone. The improvement took only hours. Now I am taking 4mgs and hoping(following Eileens system) to reduce. So far I have not managed. Next week I have a 16hr flight to Sydney so I will wait until we return to try again.
Re excercise- before I knew what was wrong I spent two fortnight sessions with a doctor who had a small clinic with massage therapists in Europe. I went every day and the gentle stretching excercises and massages slowly loosened the tight, stiff tendons and muscles and felt better. The pain did not improve, but the movement was
increased.
When I returned home and started the meds the pain improved.
Now I am in manageable pain and only stiffen up if I do not move around enough or excercise.
I forgot to mention that I am 71 yrs old and several family members have RA, Crohns,
GCA,psoriatic spondylitis. So, I suppose I come by this condition honestly!
I did hope that the PMR would "burn out" but no luck so far!
EileenH yvonne45604
Posted
I did manage it for 5 years with similar measures to yours but the pain was always there. But now you are at 4mg - don't rush! From here on your body has to make its own cortisol too as 4mg is less than you body needs daily to survive. It is excess corticosteroid that causes the problems so that risk is minimal.
Have a lovely trip to Sydney - maybe the warmth will help! And make sure you have enough pred in case you have to up the dose at any point. I work on the concept that if you have thought about it in advance it won't happen ;-)
pat38625 yvonne45604
Posted
Like yourself it took approx 6 months to get a diagnosis of PMR and duriing that time I also developed what I now know to be GCA. My GP and myself were going down the route of ME/CFS which I had been diagnosed 14 years ago. Also I was putting the GCA down to Neuralgia. My GP wanted me to go to A&E on two different occasions but I was too ill to sit in A&E for maybe 5 or 6 hours but I had to attend my dr. every week.
The pain of PMR was excruciating, I couldn't get in or out of bed, couldn't turn in my bed even to get painkillers to enable me to get up. I couldn't get in or out of the shower. I couldn't get dressed and when I had to go to drs. which would be an 8minute drive, it took me about 2 and half hours to get showered etc. My 32 year old son lives with me and I could hardly ask him to help me.
I want to be more flexable and move more as I am very sedentary so I am going to do Pilates when the machine arrives. Thanks Yvonne for your contribution. Pat
yvonne45604 EileenH
Posted
I am beyond grateful for yours and others contributions. I have felt really alone until I started reading the back and forth on the site. Also, I feel lucky not to have some of the other conditions that I read about here.
Thanks to everyone for their input and good wishes to all for a "healthier" New Year!
I have two months worth of pred to take with me! A bit like carrying an umbrella to make sure it does not rain!
Regards,
Yvonne
EileenH yvonne45604
Posted
Make sure your pills are duplicated in your hand luggage, pockets, checked luggage, companion's luggage. And take a letter/prescription with you saying you need it and why - cover EVERY eventuality!
yvonne45604 EileenH
Posted
I will look up the DVD. I do try not to talk about PMR to anyone other than my husband and my doctor. I am sure it is boring and depressing for others to listen to!
Of course, the downside of doing that is that the outside world does not really understand how much pain one is in and how tired one gets.
Thanks for the good advice,
Regards,
Yvonne
constance.de yvonne45604
Posted
yvonne45604 constance.de
Posted
charlie44644 pat38625
Posted
Other than being tired I have not had any problems. I take my naps as needed.
Some days I don't have much energy and I just do what I can do.
If you have been doing Pilates, try to continue what you have been doing.
If you are just starting out I would seek guidance from an instructor as the Pilates equipment can be a bit tricky. Don't be over zealous. You will not cure PMR by stretching, but I believe doing controlled exercise is beneficial. It is one of the few things that has consistently been shown to be beneficial for your body.
Charlie 66466
pat38625 charlie44644
Posted
There is no cure for PMR whether I stretch or not, but I do agree that controlled exercise can only be good for me. Thanks again.
yvonne45604 pat38625
Posted
When I looked it up on line I see it is supposed to reduce the effect of the Pred.
Has anyone had any experience? I thought I would get a more informed answer from the forum than from my doctor!
constance.de yvonne45604
Posted
thread instead of trying to go it alone.
The experts will be in touch shortly.
pat38625 yvonne45604
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EileenH yvonne45604
Posted
Really, you shouldn't take any supplements when on prescription medications without discussing it with your doctor and/or checking with the pharmacist and asking them to check it properly. They should have a programme that signals potential interactions but if they haven't then they should look it up. Calcium/magnesium/vit D and that sort of thing are all OK but anything herbal should really be avoided.
yvonne45604 EileenH
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pat38625 EileenH
Posted
EileenH pat38625
Posted
When we went to South Korea we got there and had to be polite and have lunch with our hosts - all I wanted to do was go to bed! Iwent to bed in the middle of the afternoon and slept solidly (except for waking for a glass of wine in the evening) until stupid o'clock the next morning when we transferred by taxi to the train - and I slept again. Then slept again at the hotel when we got there. After that I was fine for the rest of the trip, despite PMR. Coming back via a night in Helsinki I was absolutely fine. Isn't it bizarre?
pat38625 EileenH
Posted
For nearly 2 years I couldn't sleep. I don't suffer from insommnia. Any more laid back and I would be dead. I tried valerian, melotonin. I don't know how many different sleeping tablets I was on and they didn't work. I remember taking a sleeping tablet and I just couldn't get over. I got up and went Christmas shopping at 6am.
I have known for a long time that there is and has been something wrong, this long many a day, but no one can seem to find out what it is, that's why I cannot wait until Thursday hospital appt at Endo.
If I don't get to bed when I need to it makes me feel very sick, when I have to lie down I have to lie down. I don't travel that much, just haven't the energy.
EileenH pat38625
Posted
If it is, then this applies:
"5-HTP might be unsafe for use. There is concern that it can cause a serious side effect called eosinophilia myalgia syndrome. Some people think this side effect is only caused by a contaminant in some 5-HTP products. But there is not enough scientific evidence to know if it is caused by 5-HTP, a contaminant, or some other factor. Until more is known, 5-HTP should be avoided."
It also says it can potentially can cause muscle problems - as if we didn't have enough of those already!
EileenH pat38625
Posted
He has his uses ;-) ...
pat38625 EileenH
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EileenH pat38625
Posted
I don't get it - they are s&*% scared about using just one week of a moderate dose of pred as a diagnostic tool for PMR but dish out anything else like sweeties. Crackers!!!!
pat38625 EileenH
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pat38625 EileenH
Posted
I know what you are saying. Before PMR was diagnosed I had on 2 different occasions been given 15mg of pred and the pain more or less went away and yet other meds handed out like sweeties, I totally agree.
EileenH pat38625
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How GPs have the cheek to dismiss work done by experts is beyond me.
pat38625 EileenH
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EileenH pat38625
Posted
Onwards and upwards!!!!!!
pat38625 EileenH
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