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.

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  • Posted

    The PMR struck like a thunderbolt 3 years ago and it took about six months for diagnosis. I was unable to dress myself! The vibrations from walking were so painful I could not believe it. I was afraid someone would bump into me! I was a mess.

    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!

     

    • Posted

      The bad news is I have had PMR for over 10 years - can't say I've noticed it improving at any time never mind burning out! You do have an "autoimmune family" don't you!

      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 ;-)

    • Posted

      Hi Yvonne, I just typed a reply and my finger must have hit a key and the message disappeared to internet heaven.  I hate that lol.  

      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

    • Posted

      Hi Eileen,

      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

    • Posted

      The northeast of England support group made a DVD to explain to people what PMR and GCA do to us for the benefit of friends and relatives who really don't get it. It is called "You are not alone"! They also have a forum of their own - even more back and forth and stories of our lives than here. We even have a photo thread for holidays, grandchildren, pets, gardens - you name it, we talk about it!

      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!

    • Posted

      Thank you, Eileen. I will take care of that before I leave.

      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

       

    • Posted

      "Boring and depressing for others" - but, believe me, not for us.  There is always someone to advise/listen on this forum.  It took me 3 years of "aloneness" (is there such a word?!!) before I found this site.  Now I have pen-pals in over half of the world - how amazing is that?
  • Posted

    I have continued my excercise routine for the 4 months that I have been dealing with PMR which involves walking and running 2 miles 3 times a week, standard weight routines and a moderate level yoga class weekly and stretching three days a week.

    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

    • Posted

      Thank you for your input.  My PMR and GCA  undiagnosed for 6 months was something I would never want to go through again.  Very little mobility, I would say I was one step away from a wheelchair.  So am taking things very easy.  I have used Pilates machine before so I do know how they work.

      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.

  • Posted

    Has anyone been warned not to take Melatonin while on Pred? The pharmicist gave it to me for jet lag and when I checked the label I see it is suggested not to take it while on an immunosuppressive med. 

    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!

    • Posted

      Can't answer your question, but am so pleased you have turned to this

      thread instead of trying to go it alone.

      The experts will be in touch shortly.

    • Posted

      Like Constance I am sorry I cannot answer your question.  Someone will though.  It's good to have you on board Yvonne.  Keep checking in, they are a great bunch on this site and can always answer queries.
    • Posted

      Noone in the UK would have been in a situation of wanting to take it unless they had bought it in the USA - it is only available on prescription in the UK. There are a lot of drugs you shouldn't mix with melatonin or only after discussion with your doctor - and the pharmacist should have known that. There are even some foods you need to be careful about with some drugs, there aren't any for steroids I don't think but mostly it is in the data sheet when there is something to avoid.

      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.

    • Posted

      Hi Eileen, before PMR and it is a while back I was able to purchase melatonin at Holland & Barrett.  It was under another name though.  I asked the assistant about melatonin and she showed me what shelf it was on.  If I come across them (they are about the house somewhere) I will post the name of them.
    • Posted

      Oooh - that's changed then. I wanted some for using for jet lag - I'd had some from the US - but when I looked then it was "prescription only". I've suggested it to friends and they found it worked brilliantly. It wasn't for me - I can sleep anytime but my husband is a pain in the butt when we are travelling! I wouldn't mind but because he doesn't sleep he expects me to not be able to either!

      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?

    • Posted

      lol Oh Eileen I think that is why I am on my own and I also think I am too long in the tooth for a relationship.  I was separated 23 years.  Maybe I am too selfish to compromise.

      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.

    • Posted

      Was it 5 HTP, 5hydroxytryptophan? Apparently that is processed in the body to serontonin and then melatonin.

      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!

    • Posted

      I am a very strongminded person - one of my friends who is a GP herself and whose husband is a surgeon once said "I always wondered what sort of woman could cope with an academic professor-type" David is the cliche absent-minded professor! Definitely a bit autistic spectrum! I think the worst thing about marriage was having to share a bedroom! Next worse was sharing a bathroom ;-)  So here we have separate rooms as studies, separate mattresses and duvets on the double bed (not enough room for separate bedrooms) and SEPARATE BATHROOMS! We had the flat built for use as a holiday flat - it would be possible for 6 people to use it for a holiday, 2 bathrooms was a must! I go to bed at 10pm, he creeps in at midnight and now rarely disturbs me. Was awake for a couple of hours last night but that is unusual - probably having woken at midnight on NYE has disturbed my sleep pattern.

      He has his uses ;-) ...

    • Posted

      Yes that's the name of it.  I knew there were letters and numbers in the name. I don't take them anymore as I said it was quite some time ago.  I have to go for a med review to my gp soon.  She put me on 50mgs of amitriptyline started off with 25mg and because I was getting no pain relief she upped them to 50mg this was when we were going down the route of ME pain in all muscles.  I don't want to take anything I don't need.  I don't know if 50mgs is to treat depression or pain relief maybe you will some idea.  Thanks again
    • Posted

      You usually start amitriptyline at 10 or 25mg and then titrate up - 75 seems acceptable for pain relief or even more. Antidepressant dose is as much as 100-125mg  But it also says quite clearly in the data that the doctor will stop it if it doesn't work - which sounded to me as if you might get some effect at lower doses, it was a case of finding the optimum for maximum pain relief. Are you getting any pain relief at all?

      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!!!!

    • Posted

      lol The exact same thing has been said to me.  My friend's husband said "If Pat wasn't sick she would rule the world" lol  I am very strong minded and very single minded.  Indpendent to a fault, well I had to be, there was no one else to lean on.  I would be a bit scatty at times, maybe not to David's level.  I also take things literally most times.  I haven't a clue if I am being wound up or even chatted up.  I think that's why I belong to the crazy gang.
    • Posted

      Initially I was taking the amitriptyline for pain relief not knowing it was PMR but she just kept me on them.  It was only at a later date when PMR was diagnosed and 20mg pred was taken that I started to get relief.  I was never as glad to have steroids in all my life.  The absence of pain is just heaven.  I am still not sure whether to stop the amitriptyline or not, I will talk it over with gp, maybe go down to 25mg and then over time just stop them completely.  We shall see.

      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.

    • Posted

      If you have had 15mg of pred on 2 occasions and it dealt with the pain and nothing else does then I fail to understand what your GP is playing at. If amitriptyline doesn't work there is no point taking it - if pred works then you have PMR and that is the only consideration to be made. Some experts take the response to 15mg pred (a moderate to low dose by anyone's standards) as pretty much diagnostic of PMR. The Quick and Kirwan paper says that VERY  clearly. 

      How GPs have the cheek to dismiss work done by experts is beyond me.

    • Posted

      It wasn't my gp who prescribed my first (1 week) steriod but a locum dr.  Then when I couldn't stick the pain any longer I rang and spoke to the drs receptionist that I needed some pain relief, so was prescribed another 7day course at 15mg.  Then when pain and stiffness was getting worse I made another appt with another different locum dr this time and I begged him for morphine patches or something and he refused.  He was the first one to mention PMR and ordered bloods done.  He was the dr that rang me at home to tell me it was definately PMR and was starting me on 60mg of pred.  When my son collected the script it was 20mg of pred.  I didn't care, all I wanted was pain relief.  So I have just kept on with the amitriptyline but will be stopping them soon.  No need for them as pred is doing the job just fine.
    • Posted

      He probably looked up the PMR dose and revised the script - 60mg is the dose for GCA with visual symptoms and has all sorts of side effects, 15-20mg is much gentler on the system.

      Onwards and upwards!!!!!!

    • Posted

      I think you're right Eileen.  Firstly he was a locum dr (the 2nd locum dr. that I had seen).  He also must have read up on my notes because I know now that I had GCA, all the symptoms, couldn't open my jaw properly, severe headache on right side of head, hair follociles were sore, couldn't touch my hair.  But again my own gp and myself were going down the route of neuralgia, having said that she did want me to go to A&E twice and I wouldn't go.  I was very lucky to not lose my sight, lucky escape, I wasn't diagnosed then with PMR so wasn't on any steriods.  My sight is my life, I have been reading since I was 4 and that is a very long time ago.

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