Hi out there! Has anyone got joint hypermobility syndrome (Ehlers-Danlos Syndrome III) and having problems with Pulmonary Rehab exercises?

[stillmovin]

I haven't yet been on my course but I am worried about the type of repetitive exercises they set you to do as us bendy people with EDS have big problems when it comes to repetitive exercises, especially on knees and back - any one please?

[stone-UK]

Hi

Excercise, are normally

Sit to stand

Marching on the spot.

Step up.

Wall press.

Calf stretch.

Excercise bike.

Shadow boxing

Waist rotation.

Weight lifting (arm).

All done to a set period of time.

Starting at 30 seconds, and increasing depending on your self monitoring. To a level of 2 minutes, I only achieved. 45 seconds on five excercises and two minutes on four.

All of the course is done at your pace, you decide our far you go, as you are the only one who knows our breathless you are.

You do have to push your self this will be explained, you are in safe hands, speak up if you have any concerns,

Above all it will beneficial . Enjoy.

[stillmovin in reply to stone-UK]

Thanks Stone. I guess it all sounds beyond what I could handle. Bikes, boxing,marching, steps up are definitely damage-causing for me. Not too much for my lungs, but for my tendons and tissues. It is hard to explain, but that is EDS. I appreciate your advice though.

[peege in reply to stillmovin]

No bikes or boxing at mine! Please dont worry, it's not a boot camp. There is a lengthy pre asessment when you can explain your worries. Many people go to PR & never get out of the chair, might have crippling arthritis or may be on oxygen. A chap on mine had slight dementia and was very well supported

I did mine with very painful tennis elbow tendonitis, I kept my arm glued tightly to my chest. One physio also had his right arm strapped up with the same complaint & fully understood my fear of using mine, he gently encouraged me how to use other muscles around the injured area & after 6 weeks it was greatly improved. I also have a dodgy knee so didn't take to the sit to stand. Marching on the spot sounds energetic but it isn't, everyone goes at their own pace - which could be sitting on a chair to doing it holding the back of a chair to doing it on a trampoline (me, I was the only one to use it). I didn't do the step ups either, too repetitive for my knee though up & down stairs at home are fine for me xx

[Toci in reply to stillmovin]

No bikes or shadow boxing at mine. And some have a travellator (sp?) and ankle weights but we did not have those either. The exercises seem to be all aiming at the same goals, but using different methods to get there, maybe based on resources?

[Hidden]

I wonder if you should check this with your EDS specialist and definitely discuss with those running the PR course.

I don't have EDS myself but I can tell you usually on PR patients work at their own pace. Perhaps also chat with the physiotherapist who may be involved with the PR course and check he/she has awareness of the EDS III.

I don't enjoy repetitive exercise myself but from my own experience each movement didn't exceed 1 minute and working at a pace that is comfortable for each person, some may manage 25 reps in a minute and others only 8. Perhaps you could check this out as well with the exercise instructor on the PR course about the repeitions.

I think the way the courses are run does vary from location to location and depends on the instructor. I have heard others mention on their PR course they do 2 minutes repeating the same movement, but this doesn't mean the course you attend is the same.

I am wishing you a good experience on your course and I am sure you can work round this with some professional guidance concerning the exercise repetitions and the EDS III.

Best wishes BC

[Toci in reply to Hidden]

It definitely does differ, as we did not do reps per minute but counted repetitions whilst going for as long as we could, some for 10 - 15 minutes. Not to worry though, there were a couple in my group who had other issues, made the physio aware and the exercises were slightly changed for them. Enjoy your course. x

[Hidden in reply to Toci]

wow, 10-15 mins doing one movement ! Incredible.

[Toci in reply to Hidden]

We had a very mixed group BC. Some did 10 - 15 seconds, others 10 - 15 minutes. We had one woman who always walked 15 minutes and a chap who regularly lifted hand-weights for over 10 minutes. Needless to say I did not reach those levels!

[stillmovin in reply to Toci]

Thanks Toci. I am having a lot of second thoughts about this course and my EDS. Will have to talk to an experienced physio in EDS.

[stillmovin in reply to Hidden]

Yes, BlakeyC, I will have to sort all this out with the physio doing the course. Believe it or not, I have been with physios who are very inexperienced at dealing with people with hypermobility and cause a bit of damage! I am speaking from experience. I think it is a shame about this as I find brief walking around the field helps my breathing a lot (although I have to wear stretchy bandages on my knees and not get carried away with my speed!) I actually can walk very fast but end up not realising what damage I am doing until a few hours later.

[Hidden in reply to stillmovin]

I get muscle fatigue and leg ache if I don't wear the proper gear, I did invest in the real deal, a pair of nike leg hugging hose, but any purpose designed sports gear I think, they are design to support the muscles during sport and exercise but probably you will want extra support on your joints too which you can get also on line or in sports shops.

[stillmovin in reply to Hidden]

Thanks BlakeyC I will look into the right clothes to support the muscles and as you said, my joints need extra support. I have a vast range of elastic joint supports but at the end of the day, careful pacing is the key thing and that is where I often slip up.

[O2Trees]

Hi stillmovin1 - i have joint hypermobility syndrome - only just being diagnosed now after lifetime of dislocating, sprains etc, but more than meet the criteria for the condition. I don't know how bad yours is - I have a friend with EDS whose hips dislocate in and out of their sockets with each step she takes - but i found PR helpful in every way. Its important you tell the physio, and its up to you if you don't want to do any of the exercises. For instance I didn't do squats as i have an abdominal prolapse (self managed with pelvic floor exercises) probably due to the JHS, and squats make this worse. My knees are ok, having had major treatment on them when i was 3 years and back not such a problem now as it used to be.

In my PR course, you started with 1 minute on each exercise, then rest for 3 min before moving on to the next exercise. Then the next session 1 1/2 min exercise and 2 1/2 min rest, working up to doing 3 minutes at each exercise with one minute's rest. It seems there isn't a standard protocol for PR. Just see what suits you and take it slow. Generally speaking, if your muscles are stronger they can support the bendy bits better, but we are all different.

Good luck

[stillmovin in reply to O2Trees]

Hello O2Trees I sent you a longish reply and can't see it so I mustn't have pressed the REPLY button! I suppose I was so surprised to find another JHS person on the forum that I forgot what I was doing! I will send another reply tomorrow as I am tired from all the responding to these kind folk who answered my query today, and I wonder what happened to my reply to you...it's late, I get like this sometimes......

[O2Trees in reply to stillmovin]

Appreciate your attempt anyway stillmovin1 Ive had that happen to me before, and now when I write a long post i try to remember to highlight + copy it before posting, so i can repeat it if something goes wrong - this site can be weird sometimes.

Look forward to your reply. I haven't spoken to many people about this yet - Im looking at my medical history through a new lens now and especially interested in any associations with copd as well. Cheers, jean

[stillmovin in reply to O2Trees]

Hi Jean. Right I am fully awake now! Thanks for your reply. I am sorry you have had a long time of JHS problems. I was always very bendy but didn't develop the 'Syndrome' until 12 years ago, when I started to pull my wrists, had back problems and bad knee sprains, as well as tennis elbow, golfer's elbow and every other funny-named sprain. My mum is hypermobile but hasn't got the Syndrome. It took years for local hospitals to diagnose me and I was treated for Rheumatoid Arthritis. The whole time was horrific. I noticed a poster for the HMSA (Hypermobility Association), showing a drawing of a person bending their thumb right back to touch their arm and I thought 'What's so weird about that, I can do that!!!!' Then I showed the poster to a new consultant that I had been referred to locally (for Rheumatoid Arthritis again) and he immediately referred me up to University College London Hospital to see the JHS consultants. I haven't dislocated anything yet and have been through Pilates exercises to strengthen the core muscles which all helped get me walking again (my knees are a bad spot). However, I developed acid reflux disease and couldn't lie on the floor to do the Pilates exercises, so that is a problem. I have also been told that the JHS is the reason I have gastro problems and could be why I have developed bronchiectasis (due to the laxity of my tissues). My JHS hospital treatment has finished and there is nothing left now but to try to manage the condition but it is difficult. I met a lot of JHS people at UCLH (mainly women!) and we all had varying symptoms. Some of us were very athletic (one was an ex-PE teacher and another used to be a ballet dancer) but now we have to work hard to keep up any activity. I just like to keep myself walking and not being stuck indoors and in pain. The key is pacing, building strength in core muscles and not striving to be perfect in everything you do! All the JHS/EDS women (and one guy) I met are all perfectionists and want to be very successful and it is quite a challenge having to adjust that side of your personality to PACE THINGS!!!! I am sure you recognise that trait. It can be managed as you obviously know. I just find that many times I have trouble explaining what it involves to people and get a bit nervous when I think I may be involved in a repetitive type of activity! All the best & take care.

[O2Trees in reply to stillmovin]

Thank you so very much stillmovin for such a detailed account. Im sorry as it sounds like you have a lot of pain on a regular basis.

Your story is very helpful to me as I've just had the exacerbation from hell with plummeting O2 levels, and although affecting my breathing it was less to do with my lungs but caused by extreme reflux side effects from the prednisolone.

I had wondered if the reflux was connected to the JHS, but its all so new, and my doctor's off sick too, so this will be what i need to investigate. Is UCLH the main specialist clinic? Wrong diagnoses seem to be par for the course. I was diagnosed as having lupus in my 40s at St Thomas's but that turned out to be incorrect. But i always felt i had high levels of inflammation but didn't know why.

As a child my knees were the major problem but they were splinted overnight for about a year i think when i was about 3 - there was the possibility of leg irons but thankfully the treatment worked and since then cross fingers my knees have been ok.

I could do all the things on the Beinton (sp?) scale, thumb touching arm, fingers bending back, hands flat on floor when touching my toes. As a child my arms would come out of their sockets on a regular basis and i would have to massage them back in again, not so easy when it happened on both sides simultaneously but that only happened once I fractured my right ankle 4 years running starting in my mid-fifties by turning my foot and the ligaments not being strong enough to support it, and my bones having thinned (though not to the extent of having osteoporosis). There's lots more but that's more than enough to give the picture.

Now my main problem is that due to the reflux i sleep on my left side on a wedge pillow and with the force of gravity being mainly on my hips, they are getting very painful. Im meant to be seeing a physio but Im going to ask now for a referral to UCLH. The other main thing is that sometimes I will get up and can't put any weight on my foot to walk - this usually resolves completely in between half an hour and 24 hours!

I am a perfectionist too, always putting myself under pressure to achieve. So stress must be part of it. When my mother died in difficult circumstances in my 30s, my neck gave out and i was 6 weeks on my back in excruciating pain, with further episodes of this, which, again touch wood, haven't happened for quite a few years. So pacing is the name of the game! Just been for a walk with my partner carrying the O2 cylinder - our neighbour jokes that she finally has me on a lead after all these years!

Thank you so much for sharing your story stillmovin. It's been very helpful. I wish you luck with your PR and hope you'll post how you get on.

Very best and good luck

[stillmovin in reply to O2Trees]

Hello there again! Sorry to hear about the sequence of pain and problems that you have had. I can identify with your problems of misdiagnosis too. When I got referred to UCLH it was by a local rheumatologist (not by my GP) and he referred me to a Dr Shipley at UCLH who was then a Pain Management consultant. When he had an examination he then referred me to a Prof. R. Grahame, who specialises in JHS and EDS. He was the one who gave me the diagnosis after doing all sorts of Beighton tests. It was just one visit. I think it was him who referred me on to the Pain Management course and Physio treatment at that hospital. I didn't see him again until I requested it with my GP many months later. He usually only sees people for one visit. This was all a few years ago so I am not entirely sure of the sequence. UCLH seems to be the main hospital for diagnosis. There is also Royal National Orthopaedic Hospital in Stanmore, Middlesex who look more into pain management of all sorts of problems, including JHS. Again, UCLH is the main JHS one. At the time I received my diagnosis, I hadn't any acid reflux or bronchiectasis symptoms. I don't know therefore, how they would treat all of these conditions at this hospital. All the best, Jean. Take is as easy as you can!

[O2Trees in reply to stillmovin]

Hi stillmovin - many thanks for all the information. Im looking mainly for diagnosis and an opinion on how this would have affected the reflux. From what i know about bronchiectasis which my sister in law has had since childhood, tissue laxity is probably more relevant to it than to copd where i think lung tissue tightens up but i could be wrong.

I'll let you know if i do get to see a JHS consultant; its been very helpful learning from you and I hope you go on ok and do get some relief from your pain. And hope the PR is useful.

Very best wishes, jean

[jojam]

Hi Stillmoving1, PR exercises will be tailored to your needs & abilities you should discuss your worries with your physio running the PR group. I'm sure that you will find the sessions useful & beneficial.

Best wishes

Jo

[stillmovin in reply to jojam]

Thanks jojam - I don't really want to pass the opportunity up when it does come along, so I will have to make sure the physio knows about my problems. I know exercise is very beneficial for bronchiectasis and all other lung problems so I will have to find a way through it all. I guess I have developed a physio-phobia (I wonder does that word exist!!!) from a few problems in the past. We shall see...Goodnight.

[jojam in reply to stillmovin]

Hopefully you will have a really supportive physio to help you overcome the phobia.

Best wishes

Jo

[CornishBrian]

I'm just about to start my 2nd PR...went on the assessment yesterday. We are lucky because the exercise regime is free flow. Last time there was a chap who had had a shoulder injury so there were some exercises he didn't attempt. There were a couple who only did light chair based exercises because that was all they were capable of. The onus is on doing what you can and striving to increase your own performance.

[peege]

Hi Stillmoving, I wouldn't get hung up on the exercise element of PR. It is only one part of it, there's also the breathing tecniques to practise and the talks/training sessions.

Each area runs them slightly differently plus the individuals may be gifted.

A bit like teachers, some are good, some realy good and some positively gifted. Two physio's ran mine but the main one was excellent, really gifted on every level. One of the speakers, a respiratory nurse was brilliant too (another not so, she seemed bored & I learnt nothing whatsoever from her).

Whoever you get, I'm sure it will be well worth your while to attend, you yourself know your body so you wouldn't be doing anything you know would harm you.

Also, many people who go on PR have other health issues too so the tutors have to know that.

I hope you get one as good as mine was

[diggerman]

Hi, I have got EDS and the hypermobility, I don't do any exercises I have never been told to do anything no body has said to me that I should. I have got Sarcoidosis with both my lungs scared and I get a bit breathlessness more often now, but if I went to my GP they would refer me to the Hospital and then to the chest person who does not like me and I don't like her. We can't choose who we have as we don't pay for it. With the EDS I read it that there are problems with people who have EDS and lung condition's but if I go to my GP or at the Hospital they will say you should not believe what people write so I am just stuck in a world of no body believes me any more. I can't do what stone says you have to do.

Regards.

[Toci in reply to diggerman]

It sounds as though you have had some problems, diggerman. You could ring the BLF nurses (click the red balloon for the number - office hours) and tell them your situation. They are good listeners and have enough experience to give excellent advice.

[stillmovin in reply to diggerman]

Hi Diggerman. You are in the place I was in just before I was diagnosed with JHS (EDS III) and it was awful. I didn't have bronchiectasis at that time. I had to really keep pushing and eventually got referred from a local hospital to UCLH, where a specialist diagnosed me wiith EDS III and from that, I was referred to a pain management programme run by UCLH called COPE, where Joint Hypermobility people only were treated. Once you get referred to a top London hospital and diagnosed by an expert, then you can discover ways of being helped by physios. And it is available on NHS. The bronchiectasis was something which happened to me later, and yes, in my case it has been suggested that it is because of my lax tissues due to EDS III. You can ask your GP to refer you to a London hospital for specialist JHS treatment (NHS). You have to ask and keep bringing it up or try another GP. It took 10 years for them to find out what I had - but I had to ask, mainly because I was in so much pain. You don't have to make a big fuss but you can be assertive. As for the connection between EDS and COPD, whether they say there is a connection or not, the treatment is the same for everyone with COPD, no matter what caused it. I am sorry for what you are going through. Please do what you can to get referred to a teaching hospital where more specialist treatment/physio/pain management is available. Take care my friend.

[O2Trees in reply to diggerman]

Hi there diggerman - its appalling you are not getting the support you deserve. Keep trying for a proper referral to an EDS consultant, but I'm also wondering as an interim measure you could ask for a second opinion. Everyone is entitled to that, and possibly the person you see might be a bit more sympathetic than the ones you've seen so far.

I don't know if this is possible in your area but my GP has re-referred me when Ive had problems with an individual health practitioner.

I hope you can take someone with you when you see specialists - it makes them feel more accountable and you have someone with you to speak up for what you want, and to note down what is said to you.

Like stillmovin says, keep on being assertive and eventually they should let you have what you need. Take care

[Hidden]

Hi stillmovin, I think I know the problem, you attend Darent Valley, that says it all. Reading all replies it sounds as though physio is hit and miss, as no-one has the same programme. Good luck

[HypoKHypermobileA1AT]

I was told water exercise is the best for us and take it easy with everything you do by a rheumatologist. I also having breathing issues but not required to exercise.