Sticky Blood-Hughes Syndrome Support


Hi, My main problems over the last 12 months coz of PEs is shortness of breathe, The least exersion and i just cant breathe, however Ive made a decision today to take my life back so Im wanting to do some eercises to help my lungs become stronger. Im going to ask my gp to refer me to physio but while im waiting for the appointment I was wondering if any one had any suggestions for gentle exercise I cantt do some things because of osteoarthritis but any suggestions would be great


10 Replies

Hi there

I also had a PE 2 years ago and have been slowly regaining my exercise and fitness. A good thing is just walking, its easy and you can vary the intensity with going up or down some steps. The other thing I have found very useful is some gentle yoga that stretches your muscles and tightens them, its very good gentle exercise but you will feel tired the next day....or wiped out as I feel some days!

Anything low impact is good, dont be too hard on yourself and take it easy initially until you understand how it affects you. Swimming is good, but when I go, I use a float to reduce the intensity so its just leg kicking, without the float I felt too worn out too quickly.

Take it gently now, its not a race!! Hope you manage to get into something that helps you

Best regards

Sara xx


Hi there

I also had PE's last year, and several bouts of pleurisy - my lung specialist sent me for pulmonary rehabilitation. There they taught us to work to make ourselves breathless, on a scale of 1 - 10 1 being normal and 10 on the point of passing out - to take ourselves to about a 4 or 5 however you do it.

Some of our exercises were -

step ups on one stair alternating your legs, try to increase the amount over days and do each one daily

sit on a dining room chair or similar, cross your arms across your chest and go from sitting to standing as many times as you can

a fairly brisk walk

lift a tin of beans in weight lifting motion up and down

do remember to stretch to warm up and cool down

Swimming is excellent

But most of all make sure you docs are happy for you to do it, it does help and make things easier, but don't be hard on yourself at first because it will be difficult but get easier.

Take care, warm smiles

Lesley :)



I had a PE and multiple DVts. I suffer with numbness and pain in my legs. I enjoy swimming i feel like i am free when i am in the water as movement is easier to control in the water. I take things really easy and sometime just move in the water rather than swim (if you understand what i mean) If i do too much i can suffer after but i try to go as often as i feel up to it. I find it diffcult as i can not walk far or do gym exercise due to joint pain etc

Good luck on your new life and exercise routine, hope you find something you can enjoy xxx


Hi hon

I think following a Pe it is important to take it slow, gentle walks, swimming or just lazing in the water, even maybe try hydrotherapy, the heat soothes aches and pains and steam helps the lungs.

Just go at your pace and don`t push too hard, listen to your body it will tell you when to stop.

Take care gentle hugs love sheena xxxxxxxxx :-) :-) :-)


I just dont have any spare energy to do much excercise after working full time, but I do have a dog and walk every day which is a kind of excercise. Exhausted most of the time and when I feel well the last thing I want to do is to feel shattered again. its a vicious circle...


A therapist can help identify which parts of you need strengthening. But any movement done slowly and with great control can be good. Lifting a can or a free weight with one arm, then another. Stand on a book and do straight leg lifts in different directions with the other (make sure you are able to maintain an erect stance throughout. I use a cheap, dime store full-length mirror.) If that becomes easy, start progressing through heavy and heavier shoes. If you feel any joint pain, try to analyze it, or write down as many circumstances of the pain as you can so that the therapist you will hopefully, eventually see can quicker spot deficits and make suggestions. Water walking has always been beneficial to me, but I must observe that breathing the chlorine-infested air at some pools compromises my lung strength (and no, I have not yet had any diagnosed PEs.) Actually, YouTube has a number of videos put together by real physical therapists which I have found to be helpful.

But there is no substitute for a good physical therapist to make sure your actions are doing good, not harm. So, to start out with -- go slow, concentrate on repetitions and form and forget heavy weights.

Good luck. Take control! Go for it!


Thank you all very much for your help. You have given me a lot to think about and as I am seeing my GP tomorrow a lot to discuss with him. Thank you all once again



Recognise much of what you write, feel that I have no muscle left. Walking far not easy. Have waited months for physio assessment from pain clinic, had it last week and we will start work soon on gentle repetitive stuff. I also go to a McTimony chiro who has sorted a good few back etc problems out with their gentle method, and she also helps me with some appropriate exercise to begin to build strength and muscles up. May be a good option if you have a local McTimoney but face a long wait for physio from NHS. I pay about £40 for 40 mins chiro after 1st assessment. Money well spent for me.


Thanks very much thats a good idea I will ask locally and see if there are any recommendations



What about walking outside? I see you are in Cumbria, is it nice to walk there? Maybe you could team up with a walking buddy and gradually increase distance and stamina.


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