Hello everyone, I have finally had an... - Lung Conditions C...

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Hello everyone, I have finally had an assessment for a Pulmonary Rehabilitation in my local area, after a year on the waiting list.

10 years ago•20 Replies

As I am a joint hypermobility syndrome (Ehlers-Danlos III) sufferer, I am anxious about the repetitive type exercises that I will be doing on this course, which will be 2 mornings per week soon. I mentioned this to one of the physios and they said that people will do what they can manage - HOWEVER - I am still concerned, as I feel this may not be the case! I certainly don't want to turn this treatment down as I have read many times on this site that it is really helpful (I have bronchiectasis and COPD too). Physios tend to be very fit and very demanding from my past experience! I also know that there could be a bit of aerobic type exercises and repetitive squatting, etc. Now I am getting worked up but again, I would be mad not to give it a go. Anyone out there with joint hypermobility syndrome and been on a PR course? Would appreciate any advice. Thanks so much folks.

(PS all my joints are prone to problems but especially my knees and toes).

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stillmovin

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20 Replies

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Suzy610 years ago

Hi still moving, when I did mine the

Nurses and Pysio, would sum up people and excuse those not up to certain exercises and give them ones they could do.

Go and ask them if you are unable to do any if they can suggest others for you.

Would be a shame to miss it after waiting so long.

Good luck, love Suzyxxx

stillmovin• in reply toSuzy610 years ago

Hi Suzy. I do hope the ones I get are as accommodating. I shall let you know how it goes. xx stillmovin

peege• in reply toSuzy610 years ago

Same here. Mine were excellent. Most people had many and various reasons they couldn't do certain exercises. I had tennis elbow at the time.

No one was forced to do anything. Please don't worry, you will definitely get a lot out of it. It's much more than exercise. You've nothing to loose and much to gain. P

Edit: ps several participants also did what they could from sitting on a chair, all helped by the physios.

stillmovin• in reply topeege10 years ago

Hi peege I know what tennis elbow feels like - I had that in one elbow and golfer's elbow in the other at the same time! All from trying to swim in the local pool! That's hypermobility syndrome for you! Anyway, thanks for the words of support. Take care xx stillmovin

aberdeenman10 years ago

Hi stillmovin When I did my pr there was a couple people who had difficulty moving about and they adjusted exercises for them

Tam

stillmovin• in reply toaberdeenman10 years ago

Yes Tam and I am sure they will be understanding at my course. Take care. Stillmovin

PentreathVolunteer10 years ago

The respiratory physio, respiratory nurse and OT that ran the course I was on last year reminded us at regular intervals to stop or not do any exercise that caused problems. They also tested our SATS at intervals. There were three people on oxygen and two very overweight and unfit but we all managed to improve our fitness and mobility by the end of the course. As you have probably been for a pre-course assessment the team will be aware of your extra needs and will be watching out for you. Please don't let worry spoil a wonderful opportunity for you. Most people find the courses enjoyable as wlell as beneficial and the people who run them want to help you.

stillmovin• in reply toPentreath10 years ago

Thanks Pentreath I know you are right. It is a great opportunity and I have waited a year for it. xxx

Jjude10 years ago

I don't have hypermobility but my daughter does, she doesn't have copd, though i do. She manages pilates very well, exercise is very good for that condition, she swims and works full time. she is also my carer and heaves a wheelchair in and out of my car. after doing some breathing exercises, I'm doing singing at top of voice after only 10 days being told i had copd, 5 mins on exercise bike, and while i sing to bon jovi Thank You, i do steps on spot. I have to say exercise is the best medicine any of us could have. Im sure PR will take any other conditions into account and be gentle, we all need to start off gentle and build up so don't worry. go for it and be positive.

stillmovin• in reply toJjude10 years ago

Well done to you! Pilates is the only safe exercise for joint hypermobility syndrome and it was the only way I could walk again after a knee problem. I just don't think the exercises that the PR sessions will be doing are based on pilates, however I will do my best. xxx

10 years ago

Hi when I went to mine no one pushed anyone to do more than they could manage. Quite the reverse. Because they are experts they will look at what you can do rather than a gung ho everyone do it approach. So relax. x

stillmovin• in reply to10 years ago

Yep coughalot. I will certainly do that - relax.

I will let you know how it goes. xxx

Colours2310 years ago

I know that exersize in water is best for joints ,be careful, I found at rehab that because they new little about me I had to stick up for myself and say no I do not want to do that as my joints are bad, I found they just wanted to get on with things as quickly as possible so be careful .take your time,it's there for you .x

stillmovin• in reply toColours2310 years ago

OK Colours23 I will be ready to speak up if I can't do something. Sometimes water can be great but I actually pulled my knee at a hydrotherapy session years ago and I have problems with it ever since. We are all different! I will definitely take my time at the course, thanks for advice. xx stillmovin

10 years ago

Dont worry it is definitely the case of doing what you can. My husband was very worried too when he went on the course but as the aim is to just improve your fitness levels not to get your super fit! And my husband found it all very useful. Good luck and I hope you find as much benefit. Take care, lots of love TAD xx

stillmovin• in reply to10 years ago

Hi Tad and many thanks for the encouragement. Also glad your hubbie found it helpful. Will let you know how I get on.xxx stillmovin

hufferpuffer10 years ago

Hello Stillmoving, I thought you might like this video....wishing you well for your course and I'm so pleased for you, enjoy it! huff xxx

youtube.com/watch?v=4GyFnei...

stillmovin• in reply tohufferpuffer10 years ago

Hi huff and many thanks for the very helpful video. The course I will be on will be two mornings a week over 7 or 8 weeks and I know it will help a great deal. I have so many health issues happening at the same time that it is becoming a bit overwhelming! Hopefully this course (don't know when it is starting - should be in July sometime) will help me get a bit stonger to tackle the autumn and winter months, which are a headache for most of us. Thanks again. xxx

O2Trees10 years ago

Hi Stillmovin - as we've discussed in the past, I also have - mild in my case - Elhos Danlos III, used to be much worse. But i still can get arm and hip problems dislocating. I also have abdominal prolapses (self managed) which are thought to be due to EDIII. So because of that I don't do the sit-to-stand exercise but leg extensions instead. The physios have been great and many on the course have particular needs all of which they cater for.

You start the exercises at 1 minute with 3 minutes rest, and over the weeks slowly work up til you are doing 3 minutes exercise and 1 minute rest - so you start with a small amount of exercise and any time you can't go on you just stop and sit down. Both patients and physios are very supportive. I do hope you'll give it a go Stillmovin. Let us know how you get on. Good luck xx

stillmovin10 years ago

Thanks O2. I am glad you have got the EDS at a manageable stage. I am always a bit tetchy when embarking on any non-pilates type exercise with a physio as I know I have to be really careful with repetitive and aerobics type movements. I will ensure I don't overdo things this time, as I am prone to do! I seem to look well and that can be deceptive when the physios see me!

Nice to hear from you again and thanks for the advice. xxx stillmovin