In bitesized portions: Due to posting problems... - PMRGCAuk

PMRGCAuk

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In bitesized portions

fren profile image
fren
23 Replies

Due to posting problems gonna do this in bits.

Does anyone out there have difficulty walking unaided? I set off feeling fine then after ten or so steps I feel exhausted and start to sigh and pant.

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fren
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23 Replies
fren profile image
fren

next bit-- Diagnosed January 2017 (ESR 40 CRP 24-- Nov '16) after 1year of being told the cause was heart?- no Lungs?-no -- must be grief ( deeply loved OH died june '15.)

Prednisolone 15mg daily made me instantly human again and got down to 2mg at beginning of december. The walking never improved.

Now I have a flare.

End of December Carpel tunnel syndrome in left hand reasserted itself at tripple agony I had surgery on the right in early 2016 under local--(would highly recommend). At same time pain in ankle which then moved to knee and stayed. Bought a walking stick Ohhhh then thought sensibly. I live in France where YOU own the illness not the doctor, so I have a prescription for a bloodtest if I am concerned My CRP had gone up from 2.7 normal to 5.2 a fraction above. I saw my GP who suggested I double Pred to 4mg. Tried this for 10 days, hand much better have already seen neurologist and am seeing hand surgeon on Friday, Knee terrible. Upped Pred to 5mg. Last Friday sought an urgent appointment with my rheumy who fitted me in yesterday. In 30 mins -no waiting - x-rayed, diagnosed as bursitis and treated with a steroid injection. Fabulous treatment --but---

Advised to stay at 4 mg for a month then recommence reduction despite returning pain in hips at night since upping to 4mg hence my move to 5mg. I have been avidly reading advice given on this site and yesterday took PMRpro's advice to go 5mg above flare dose ie; 7mg

Feel fabulous today and have slept despite knee being painful but not agony.

Aaghh-- have just lost another paragraph, starting again----

I am a retired nurse but had not heard of PMR until my own diagnosis. My GP and Rheumy are really good and follow the French treatment guidelines, so when I tell them I have split the dose and reduced in 1/2 mg drops, I get raised eyebrows but a nod -"if that works for you it's ok".

PMRpro profile image
PMRproAmbassador in reply to fren

Your problems are almost entirely due to being at too low a dose I suspect. 7mg is a low dose, about the same or a bit less than the amount of corticosteroid your body makes in the form of cortisol so there is not a lot to worry about if you have to stay there. I'd be delighted to be there!

Carpal tunnel syndrome is often part of PMR and I'll lay odds the hip pain at night is trochanteric bursitis. I had knee problems - a rheumy told me it was "OA - I can feel it" - but when I finally went onto pred it went and has never come back.

Now - how to persuade your doctors to slow down!

How good is their English? All my medical articles are in English...

Where in France are you? I have a friend with PMR not far from Limoges (near Bellac I think) and Idasmum on here is from a bit further south I believe.

fren profile image
fren in reply to PMRpro

Thanks PMA pro, forgive me if I keep having to pst and re-edit as I keep losing what I have typed and typing with numb fingers on my left hand is a bit hit and miss, and very slow.

I live South of Nantes about 30 mins drive from the coast, love it here and would never come back. My GP and Rheumy both speak English but refuse unless we get stuck and it is always done with good humour. I chose to live here so it is for me to make the effort.

will post this and then continue

I don't think my GP knows a great deal about this but he is very willing to listen and tends to give me control over my doses. He thinks that the walking problem I described initially will eventually improve but I can't wait too long. I've even had a physio supplying a fitness bike in my home and suggesting i pedal 10 mins a day and being genuinely distressed that it just exhausted me and put me in fear of the next attempt. Then a psychologist who has helped me enormously with grief and self forgiveness but the walking has not changed. I can push a supermarket trolley for miles at my own pace but that don't help me to walk my dog.

Just saved it again

So, sorry about going on a lot. I can trace my PMR back 5 years plus. Hearing myself saying "sorry love you have to give me an hour in the morning before I can help you." and " oh I wish i could stretch out and watch TV with you but that old couch hurts my hips." Not to mention 3 new mattresses in the year before diagnosis. There is so much water beneath this bridge.

Anyone out there have this walking problem, no pain, no stiffness just overwhelming fatigue. Desperate for advice.

PMRpro profile image
PMRproAmbassador in reply to fren

Lots of people do have walking problems - especially if they have myofascial pain syndrome. Your physio may be able to help there - I'm in the middle of another course of therapeutic massage. When Astrid attacks the spasmed muscles it makes me squeak but it is totally worth it! Bowen therapy helped me a lot too - but it has to be a good therapist.

What about trying walking with Nordic walking poles? That has helped people in the past - and is less "I'm old" than a rollator so easier to get your head round! Though holding a dog lead might be a bit of a pain...

I lived in Germany for 10 years when the girls were small - as a good an encouragement to learn a language as any! When we went back to the UK we said we would live in German-speaking mainland Europe again - and this bit of northern Italy is German-speaking as it was once part of the Austro-Hungarian Empire. The train line in the village was originally built to go to Maribor. I also translated medical and science texts from German to English for over 30 years so there isn't much I can't cope with - but I know the German to English way, not the English to German!!! Even I have to look things up occasionally. And no - nothing would induce me to go back if I can help it.

yogabonnie profile image
yogabonnie

I have nothing to add to the above wise comments except what a BEAUTIFUL part of the world you live in. I had time in Le Croisic and loved it there so very much!!

fren profile image
fren in reply to yogabonnie

So thankful, I know I am so lucky to live here. Not only is it a lovely place, but it is so civilized. pride in and care for those around you is taught in school, respect for those with different cultures is part of the local community. Care of people and the environment is just part of being French. I am proud of my adopted country and also proud of being European.

Came here in 1999 on holiday and put in an offer on a barn in a field. Paperwork well in progress when OH had massive heart attack.

yogabonnie profile image
yogabonnie

So sorry about your husband. So terribly sad and difficult. And does contribute to the stress of PMR and getting well. I WISH I were European. I am ashamed of my country at this point. Sad state of affairs. (But I love when I live part time in Sweden! a VERY different story!)

fren profile image
fren in reply to yogabonnie

Not sad ,( I keep losing my typing and having to post and edit) he decided to LIVE until he died and together we made a house from our barn. He had wonderful care from his consultant cardiologist, until he died in 2015. In France you are completely cared for by one specialist consultant, the health service here is really good.

My daughter and her family joined us here 18 months before her dad died to help me as he became more frail and we are proud that he was able to leave life in his own bed and have us with him.

Stressful yes but I have incredible memories and a very courageous example to follow.

Now I have a son- in law who teaches at the lyceé and is in a band, A daughter who runs French conversation classes, and a completely bilingual 12 year old grand daughter.

Enough. My life is very full I just need a boost with this PMR.

Is Sweden like this?

Post brexit uk is very very weird place for me. I loved being part of Europe then the world. Having to hold onto yorkshire and the world now! I usually Like living here but the idea that loads of British people don't want to be part of broader community is sad.

I use a crutch to support weakened left hand side. I tried two but need one. I take dog to places where she can be off the lead. I can't remember who called it SDORFD ....sit down or fall down. A feeling i know very well.

fren profile image
fren in reply to

Hello Poopadoop, I am a Yorkshire woman too, in fact a Tyke, born and raised in Leeds, My kids too Have sisters in Leeds and near Huddersfield. I do miss the Yorkshire moors at times, but that soon fades when I watch the British news. I do enjoy "Look North" occasionally.

My Physio suggested nordic poles but I was a bit too embarassed to try. That was silly, I think I have been rather low and negative recently . Just expressing things is restoring my positive vibes. Will make an effort with the Poles. I have found the walking stick makes me walk with a straighter back so will try that outdoors instead leaning on a shopping trolley, when the knee pain is gone a bit more, and pooch in back of little car to find a local lane without cows ducks chickens etc. Not ready for a park yet as don't bend well enough for the poopa scoop.

PMRpro profile image
PMRproAmbassador in reply to fren

Loads of older people here in northern Italy use Nordic poles for everyday walking - and looking at them, they aren't going about it as real Nordic walking!

fren profile image
fren in reply to PMRpro

I feel really bad that I so disappointed my delightful physio Lucie who regularly travelled 60 km return to motivate and support me on that treadmill cycle and in the end to bring me the nordic poles which I confess I did not even try. Lucie was sent by my pneumologist who had sent me for a stress test who found nothing wrong with heart or lungs but that I needed to build up the strength of my cardiovascular system. When I said I had PMR it meant nothing to Pneumo or Lucie or the stress-test people, Just kept saying I needed exercise. Was thoroughly fed up with failing all expectations kindly meant, so was glad when eventually they gave up on me and took the pressure off. Now, a bit more relaxed I am thinking I may give those poles a go when my knee has resolved, but quietly, at my own pace.

Bye the way I love Italy. When exploring Europe with my daughter in an old banger we came through the Alps from Austria to North Italy travelling backwards in the car on what looked like the metal skeleton of a wild west wagon through a seemingly endless tunnel in pitch blackness. Wonderful memory!

More recently (last summer) found the perfect way to sightsee any where with PMR.

Segway. only takes small adjustments in balance and you're away like a teenager. Rome was wonderful even in a cloudburst,whizzing up gullied streets creating fountains. Since then (October)- Cordoba and Seville. Plans for Prague, Vienna,, Berlin, etc etc etc.

PMRpro profile image
PMRproAmbassador in reply to fren

That's interesting - I have wondered how we would do with a Segway! I think they have them in Valletta on Malta. There is a guy here in the region who has a wheelchair build on a Segway - he still has upper body strength and it is perect apparently. They are allowed on cycle paths here and we have LOTS of cycle paths!

I think half the problem is that physios have a fixation that everything can be improved by exercise - mine is very aware of the problems of PMR and her job with me is massage! I would like to do more to build up my back muscles but we can't do anything until the muscles are in a receptive state and we barely get there and the 12 sessions are used up!

in reply to fren

I understand the bending!

I am originally from methley...but have lived in what was the peoples republic of South Yorkshire for about 25years.

PMRpixie profile image
PMRpixie

Yes. There are days when I feel so weak and hurt so bad that I feel tears welling up in my eyes. Am currently on 5mg (down from 20 - 3 years ago and just hate going higher because it seems I have to go up significantly to make a difference and then the side effects are awful. I dread steps, even 1or2, without railings. Do you get a heavy chest? I used to be a nurse so the curtailment of activity is depressing. Have had all the ruling out tests for additional sx and all were ok. Everything I am experiencing is part of the PMR.

😌 sigh...

fren profile image
fren in reply to PMRpixie

Hello PMRpixie love your name.

No I don't feel my chest as tight or heavy but as I try to 'set sail' full of confidence it is like all my energy drains and I start to sigh and pant. The physio suggested trying to concentrate on breathing with my abdominal muscles which calms the stress but unfortunately seems to be followed by a steel girdle crushing my hips so I have to sit down anyway.

Me too retired nurse, also H/O mild asthma from childhood and sin of all sins an ex smoker so until the blood test results, after more than a year of investigation, everyone presumed heart or lung damage.

At least with a diagnosis I can get myself back in control of my life however restricted. Like you I sometimes tearfully rail at the things I know I cannot tackle at the moment... oh my poor garden!! Most recent distress was explaining to my 12 yr old grand daughter, who lives here in our extended family household, that the tears I was trying to hide were not for missing Grumpa or the pan she was burning, but the frustration of not having been able to make her favorite Nana Chicken Nuggets for some time.

I have been reading that wonderful article about 'spoons'. and I plan to take control by saving spoons for special things like passing to my daughter my joy of gardening from a garden chair!! and sharing the MAKING of treats with matilda from a kitchen stool. It really has helped sharing that article with my daughter and we are trying to work out ways that I can feel that I pull my full weight in our household within my current physical capacity. Finding different ways of doing things and forgiving myself on those inevitable down days.

I'm not giving up hope of future improvement but need to get and keep a much more positive handle on the here and now.

I wonder if someone could put that 'spoons' link up here for other people.

PMRpro profile image
PMRproAmbassador in reply to fren

Which? Take your pick:

healthunlocked.com/pmrgcauk......

healthunlocked.com/pmrgcauk...

fren profile image
fren in reply to PMRpro

Thanks PMRpro,

It was Christine Miserando, butyoudontlooksick.com

These have also been really helpful, hence my long delay.

PMRpixie profile image
PMRpixie in reply to fren

Yes indeed! The spoons article is like a ray of sunshine on a cloudy day. I applaud your positive outlook and adjustment to this crummy condition. It is hard. I feel like it's taken away a chunk of my life but then I remember the many people who have lived with limitations their entire lives. Being a pediatric neurology nurse for 30 years I witnessed children with disabilities and pain that would be endured for a lifetime. Still, while in pain (and using up spoons)😕 , it's hard to get beyond it sometimes isn't it? One of my worst pains currently is in my R Sacroiliac joint. The PMR in my hips has caused a pelvic tip and that joint is pinched. A cortisone injection lasted 2 weeks and was painful. It is so hard to have patience sometimes isn't it?

PMRpro profile image
PMRproAmbassador in reply to PMRpixie

My sacroiliac problems are more than a bit due to myofascial pain syndrome - the spasmed muscle tighten the joint. OUCH! I haven't had injections there but the physio and therapeutic massage/manual mobilisation do a great job.

Originally they wanted to do it by morning infusions of high dose steroid plus painkiller and night time infusions of diazepam which is fairly standard here. However I had a severe reaction to the i.v. diazepam and it was stopped after the third lot (first was fine, 2nd triggered severe a/f which they put down to the high dose steroid and stopped it, 3rd lot of diazepam led OH to use Dr Google) - but it had started the job and I felt GREAT! The Pain Clinic did the rest.

fren profile image
fren in reply to PMRpixie

Yes, I so agree that it is hard to get over pain and limitation, and so easy to feel overwhelmingly guilty that we moan even when aware that others have it so much worse. However, isn't it time that we congratulated ourselves on the days when we don't moan and in your cases PMRpixie and PMRpro, recognise how invaluable to newbies like me is your experience and support. Feel proud, not down, and let our respect and gratitude ease just a little of the pain.

Got to go now as I have the hand surgeon lady tomorrow.

What we now need is something to make us laugh. I shall work on It!

PMRpro profile image
PMRproAmbassador in reply to fren

I certainly don't feel down - it would have been a miserable 14 years if I did!

PMRpixie profile image
PMRpixie

Wishing you a spectacular day😊

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