I had my assessment for Pulmonary Rehab last week, was accepted for the course. I saw my Rheumatologist a few days later, she said I can't do it as I have Fibromyalgia, Lupus and arthritis.
Everyone I have spoken to, has said I can do gentle exercise at rehab. But the lady who assessed me said I had to push myself, lift weights etc. I can't do that as I have torn rotator cuffs
As in the title, I'm confused!!
Do what you can be governed by your body
The physio said I will do as they say basically, Rheumatogist said no
No you do what is safe for you to do
Did your Rheumatologist explain why PR wouldn’t be suitable for you? If not, then I think you should check, just to rule out any possibility of causing yourself any harm.
Because I've got too many joint and muscle problems she said
The PR I went to you only did what you could, so my advice is to go anyway and just do gentle exercises. Even if you can't exercise you can certainly take part in the rest of it x
Have a good talk to the physiotherapist when you next go to PR and tell him/her what you have been told by the Rheumatologist who is the expert in dealing with your ailment. When it comes to the amount of exercise it is safe to do the Physiotherapist is the expert. In any event PR will benefit you even if you just sit twigging your thumbs.
As an after thought, some Physiotherapist still believe in the old saying 'No pain no gain'. That works in some places but certainly not in the PR environment and anyone saying that should be reported to the person in charge.
Thanks all. The physio said if I don't push myself there is no point in going. I cannot push myself, so it looks like I won't be doing it.
This sounds like a different interpretation of the pr course.
The course. I went I was worried about getting breathless,they were very reassuring,said it’s about getting strong so that I can cope with my illnesses better.
NSIP.and lupus plus ?
I enjoyed the course. There was a physio and an assistant,they observed us carefully,particularly the new people.
Your physio sounds as though she should be running a boot camp!, good luck. Don’t let this discourage you.tryte course.
I only used to lift the half kilogram weights as. I have a bad shoulder.
At the end of te course you should get an appraisal form to complete.
This will be your chance to give your opinion!
I can't believe that you were talking to the person in charge if that is what you were told getting there and taking part is pushing yourself. Don't give up on this Kasey the benefits are too great to miss out on. They had a bully physio on the second PR I went on, just ignore them and do your own thing, don't use it as an excuse for not continuing, you will soon make friends who will support you. 😉
Bless you. 😊
Absolutely Agree with everyone here, Your physio is the best to advise you, Your Body, go gentle , you can move with gentle exercise, don't need to push that hard. Sit in and watch and ask Questions. XXX
I’m afraid not all physios understand fibromyalgia or other chronic fatigue ailments. My husband has fibromyalgia and arthritis. One physio pushed my husband to exhaustion to the point he couldn’t remember what she had said to him or what he had said back and then he had a hour long drive home. He then could barely get out of bed for two weeks after. Same physio said the fibromyalgia pain wasn’t real so he should just ignore it and he just needed to do more then he would back to normal in a few months. Basically it’s all in your mind and you just need to get fitter.
That's awful. I can't risk any more joint problems and I told her I know how far I can push myself. I think it's because I probably present better than some, I'm not gasping for breath. She actually asked if I still had COPD and laughed when she met me, but was dumbstruck when I told her all my health problems.
Well you could always give it go but be prepared to stick to your guns if you feel you are being pushed too far and don’t go back if you don’t think it is going to be helpful.
Kasey perhaps you could ask your rheumatolgist re a physio class specifically for rheumatology patients. I have been to both and rheumatology is much more gentle than is PR. I was just thinking you could then ask the advice of the phyio who takes the rheumy class. Eg: when I went to a rheumy class we were marching on the spot and she asked me if I wanted to try a minute on the steps to ‘kill 2 birds with 1 stone as it were.’ They may be able to advise then re what you could manage in a PR class.
I reckon your rheumatologist need to clarify the decision h/she made.
Good luck.
Love cx
Oh....My.... Goodness. Ignorance, ignorance, ignorance on the part of your therapist. I have had Rheumatoid Arthritis for years and it's a big no, to further damage your joints with vigorous exercises. Gentle, definitely is nice but as soon as you feel pain it's too much. Your Rheumatologist knows you and your condition. I trust them and their advice.
You can do breathing exercises just fine. But our joints are already at literally breaking point with severe arthritis. The physio therapist must adapt to the needs of the patient. The patient does not need to be adapting to the whim of the therapist. That got my goat 🐐. I'm so sorry you have to have this totally unnecessary stress Hidden . Surely there is someone you can talk to about this?
Please keep us informed if you can.
Love,
Cas xx 🐐🐐🐐
I’ve got fibromyalgia and have done both the pain clinic course and respiratory rehab. There is so much else to learn at respitory rehab than just the excercises. The physios put you in a group depending on your disabilities and you have your own sheet of excercises and you just do what you can👍 I benefited in different ways from both excellent courses and took what I could do from both of them. ❤️
I would personally go along to the rehab and do the course the physio will only give you light exercise and will only increase it slightly if you manage to do it with out to much effort.
Maybe get your community nurse to find another group you could join I go to one called FAB in Birmingham and its talks about diet and other helpful things it's an 9 week course and we do tai chi as an alternative exercise gentle sitting its brilliant doing leg exercises etc to relaxing music. Then we have a chat about our health if you want with other people then we sit while the physiotherapy talks us relaxing techniques to help us relax with our breathing. It might suit you. Just finishing my course and my breathing has improved a lot speak to your gp surgery and arrange for respitory nurse appointment or get her to come to your home and ask about this type of course. I was so pleased I did the course. I put my name for a different course which the people who run the course have to refer you to you dont have to do it. My hubby persuaded me to go for it so just waiting for confirmation I'm on the course again tai chi etc but a more intense course I get lunch thrown in .as hubby said if I do the course and not enjoy it I can leave. But my consultant wants to see me walk up the corridor to his office in the hope he can put me through for coils operation or if fit lung transplant it's made me so determined and I have become more confident. Speak to your respiratory nurse I rould reccomend the sit down tai chi
I would also go to the PR and explain what has been said. PR wasnt just excercise when I went.We had talks on how to manage various aspects of respiratory disease,breathing exercises,diet etc. Can you walk? We had a walking section where our oxygen was measured over a 6 min walking period etc. I am sure that they could accommodate you in some way even if you just listen to the talks? I have severe osteoarthritis apart from my IPF. I was told by my rheumatologist that gentle exercise would help a lot. I hope you manage to get sorted out!
Hi Kasey1
You have been given some very good advice above.
I agree that some gentle exercise suitable for your condition is the way to go. Hope you find something suitable because going out to a class has so many additional benefits.
Take care
Corin
It's YOUR body Kasey1. You are the one with the pain, the conditions - you need to be the one to decide if you can do PR. So I agree with everyone, go along and start very very gently. Sounds like the rheumatologist thinks PR is about body-building - crazy. The weights used are from a very low weight - half a kilo, about as much as a tin of beans. It's all generally upper body stuff so using your arms lift weights and you could conceivably just lift one arm at a time. Even lifting your arms without holding the weights will give them more exercise than if you did nothing.
I cant stand it when health professionals are so patronising and take our agency away.
Thank you all so much for your replies, I feel quite choked at all the support.
The Rheumatogist was fine, it was because I told her all I'd been told at rehab, and she didn't think it was a good idea.
As I said previously, I present as OK, in the waiting area, other patients have actually said "your breathing is fine, why are you here?" I get so angry at having yo justify myself. When I tell them my lungs have collapsed 3 times, been admitted to hospital with pneumonia regularly, have Interstitial disease and COPD, only then do they understand.
I want and need to have rehab, but I was told I have to push myself, and I can't risk it.
Kasey, just a thought, would swimming be more suited to you?
I was sent to Pulmonary Rehab a few years ago and I also have Lupus which has damaged my lungs. The Pulmonary nurse sent me without consulting the Rheumatologist.
When I went to the rehab the Physiotherapist and her assistant did not want to listen to me when I said it was too much and when I became very distressed I was told you can rest a little.
I dreaded going and didn't finish the course because with lupus you cannot push yourself the same as other people because we suffer a lot from fatigue and the lupus will flare up causing a lot of pain and all the other symptoms to come back.
Sorry for the late reply, been unwell.
I appreciate all your support. X
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