Hydrotherapy/Hot bath & Hypermobility

[nonyanomemory]

Daughter's physio said there had been research done to say that hydrotherapy can actually stretch lax ligaments further and said she wouldn't recommend it for either of us for our EDS. Same reason i suppose why shoulder surgeon wouldn't do the procedure in me which involved heat (am so sorry can't remember name of procedure Ihave terrible brain fug tonight) as he said it could well stretch ligaments further. I know some have had great benefit from hydro so I guess what suits one may not suit another!
I love baths for joint pain they really really help, but i am wibbly wobbly afterwards and always have to lie down in a soft safe place. I also have difficulty regulating my temperature (always have done was a very prem baby and temperature regulation seems to have hung around since then lol) Even if it a boiling hot day or the heating is on full blast i shiver and shiver and shiver after a bath even if I am feeling hot. But love the feeling of bubbles and soothing effect but am not the type that can have a quick bath then go out, it has to be a planned thing.

nonya

[Raie]

!
I love baths for joint pain they really really help, but i am wibbly wobbly afterwards and always have to lie down in a soft safe place. I also have difficulty regulating my temperature (always have done was a very prem baby and temperature regulation seems to have hung around since then lol) Even if it a boiling hot day or the heating is on full blast i shiver and shiver and shiver after a bath even if I am feeling hot. But love the feeling of bubbles and soothing effect but am not the type that can have a quick bath then go out, it has to be a planned thing.

nonya

I can totally relate to that - Its like I wrote that! I adore having a bath its like during the bath its great but after I feel quite 'wobbly'. I also suffer from temperature differentials - I had always put it down to side effects of drugs! I could never really have as many baths as I have without the help of my partner though.

Raie x

[wobblywoo]

I had my first session today and it was wonderful being able to actually exercise without pain Has anyone else had this?

It was in the normal swimming pool and could have done with being a bit warmer but you can't have everything i suppose. It was a group session so we all warmed up together and then went through our own exercise plan for about 30 mins. I was so nervous about it before i went but apart from having to stand on the edge of the pool in my next to nothings for 10 mins waiting for the normal swimmers to leave the pool it was fine, I would recommend it

woo
x

[notsparklynow]

hiya

was told today that in addition to the HMS I was told I have a month ago, I also have fibromyalgia. The consultant wants to try things other than just symptomatic pain relief, and mentioned physio and hydrotherapy. He said I might be able to have cognitive behavioural therapy but doesn't seem sure whether I should have it.
What does hydrotherapy involve? It sounds interesting and I like the idea, but don't know much about it.

notsparkly
modnote: post and replies merged with existing thread

[leashy11]

I'd be interested to know about hydrotherapy too, my physio briefly mentioned it a while ago as I have HMS and Fibro too but the only option I seem to get offered is pain control so I'd like to know about this too!

[Tibisca]

Hi,
My mum has had two courses of hydrotherapy, It takes place in a waist deep pool which has a higher temperature than a public swimming pool. She had a physio in the pool working with her on a one to one basis. At the same time there can be up to 3 others in the pool all working on different exercises according to their need with their own physios. For my Mum it was the best therapy that she received to get her shoulder mobilised and to improve her general welbeing and muscle tone,( at the age of 80 she received multiple injuries in a road accident and spent 6 weeks in intensive care and another 3 months in hospital ) for her it kick started things into moving properly so she could manage physio on dry land. The day after she would be very tired and sore but then her pain levels would show a definite improvement.

Hope this helps

[notsparklynow]

in reference to a couple of posts above - I've been reading about fibromyalgia tonight and difficulties with temperature regulation can be part of the condition apparently. I've been aware over recent years that I can't regulate my temperature (can't stand extremes of temperature) and can flit between hot and cold rapidly. I have learnt to invest in layers! its to do with the autonomic nervous system - which can also be affected by HMS too. So you're not alone!

[serenity79]

I just had my first hydro session today, I really enjoyed it. Shattered now, but I think I'm going to enjoy the 6 weeks, I love the feeling of being in the water, I always was a water baby and being unable to go swimming anymore was one of the things I have hated the most about being ill. The water was at perfect body temperature and it was just a small pool with one-to-one therapy so there's no one else in there while I'm having my therapy. As I can have problems with hot water and a lot of people around me, this was lovely. Then when I got out and showered off the assistant wrapped me in a big fluffy towel and gave me a drink, and I was able to take as long as I needed to get dried and dressed.

[Georgie149]

Hi,

Ive been reading people's reports on hydrotherapy and finding them interesting as I have just been for my first session today.

The physios were very good and VERY patient. I literally spent half an hour with them trying to put my spine and pelvis in the right place as they want me to learn to stand properly to get the absolutely massive curve out of my spine from severe hyperextension. I found it SO HARD - everytime I finally got to being in the right place, I couldnt move anywhere because I'd just go straight back to where I was and would have to start all over again! It also felt so weird and painful to stand in this new position. It was bad enough in the water but when the physio on the side had me do it not in the water, it was nigh on impossible! But they said it's going to take a long while to achieve this and appear to be prepared to wait so....... going back on Thursday for try number 2.

My problem now is I am awake at 1.45am because my leg is SO PAINFUL. I usually suffer from this, which I mentioned to them this afternoon - sort of numbness/deep ache in my lower left leg and knee. They said that it is a trapped nerve in my spine and didnt seem overly worried about it. Usually its just irritating but I can ignore it and sleep. Today - my days, it's horrendous. Moving my leg around helps slightly but whatever I do its absolutely awful. I dont know if its anything to do with the standing differently, if i've trapped a nerve even more, but I cant sleep its so bad. I have no specific pain in my back (although I have taken tramadol, so I may well do for all I know at this point!) but this sensation is completely resistant to the tramadol.

Has anyone else experienced anything like this? I have another session on Thursday so I will say something then, but I'm tempted to call the department tomorrow ?

Thanks

Georgie xx

[madmum]

Years ago i tried hydrotherapy and after passing out twice i was also left in more pain in my knee than when i started so had to stop. Apparently it affected my blood pressure. I found out recently that the same happened to my mother. I do use a warm shower at home and look like a lobster afterwards. I do have to be careful as i am more unsteady afterwards but find the heat great for pain relief.

[nonyanomemory]

Hi Georgie,
I am sorry you are having this experience further to the hydro. Yes I think you should mention this as if nothing else it is important that they record it. As with all things hypermobile it is important that the treating professional has a very good understanding of hypermobility. Because it is easier to exercise in the water without feeling so much pain it may be that perhaps making your sessions shorter and the referral time longer may help. If the treating professional is used to treating those with scoliosis for example but not hypermobility then it is important that they really get to know their stuff about the condition. So making sure that while they are concentrating on your back, your hips are aligned, knees not backbending/awry ankles and so it goes on. In another post tonight I mentioned the importance of any treating professional understanding that pushing a hypermobile patient too fast too soon can cause problems (I am not saying this is the case for you just mentioning it). I understand also that it is often necessary to feel some pain in order to gain if you get my drift but unexplained or severe symptoms further to or during any treatment should be taken seriously and documented. If necessary they can adjust the regime to suit. The hypermobile patient can often be a challenge.

Good luck with the hydro and I hope you gain relief from your symptoms, you have my empathy. But remember its your body and sometimes our body is trying to tell us something. Now it may be that yours is just complaining from being in a position it is not used to and this is normal if this is the case then you need reassurance that this is the case. If it is not normal then they will have to decide what is in your best interests.

I know some with POTS have a lot of difficulty with hydro. Many benefit. Some don't. Some do. I think its a trial and error thing to be honest.

Finding physio/hydro hard in terms of learning the positions required or muscle placement (for those who may have done core stabilising or shoulder rehab! can in part be down to our poor proprioception. Try the search facility for proprioception for more info. In short its not knowing where our body parts in space in relation to ourselves! So physio's etc. have to be mega patient with us. Those professionals with at least a working knowledge of the condition should know this.

Kind Regards

[gila]

re hot baths- since shady gave me a 'baby bath thermometer' and I worked out what's a good temperature for me- I havent had any 'need to get out of the bath or else I faint' episodes

even atm whilst I seem to be in an 'autonomic dysfunction flare' and having more probs than normal for me with standing/sitting upright/digestive stuff/hot- and coldness- I've not had any probs in the bath

might of course not work for others- but baby bath thermometers dont cost much so might be worth a try
xxg

[Dannie]

Hi All.

Following on from my previous post, Ive just had medial femoral ligament reconstruction using a hamstring graft as my left knee was basically falling apart!

I saw my consultant yesterday for my 2 week post-op check up. He said that I was recovering well, but I seem to be very aprehensive about bending it (which of course I am.. I blooming hurts).

He has now refered me to my local hospital for physio. I have had numerous encounters with physiotherapist (ours rotate every 6 - 8 week so as your settling with one you get a new one) and everytime I explain that I have HMS they give me a look as if to say " oh great we've got a bendy... this is going to take a lifetime!". Each time ive had physio its ended up with " theres really not alot we can do for you now.. we've tried everything! "... I really dont want this to happen this time as I know if I dont have physio my knee will eventually seize up, and be worse than before the operation!

My consultant has suggested that I do Hydrotherapy, as apparently it is proven that us bendies recover better? Has anybody else heard this and does it actually work? Im willing to give anything a go at the moment! Could you tell me a bit about the pro's and con's?

Thank you in advance

Dannie x

[madmum]

My son had hydro as part of his intensive rehab and it made a huge difference. I also watched a severe cerebral palsy child who had hip surgery use his thin legs he does not walk on almost kick the physio over as he moved freely in the water. It takes your weight but makes muscles work hard to keep you balanced. As long as you can tolerate the heat then go for it.

[Dannie]

Just an update.

After asking for hydrotherapy for the last 3 years, I went to a new physio yesterday and asked about it.... And she couldnt have done more to help get it oganised!!!!

Im sooooo happy!!

This lady is amazing! We sat and spoke for the first 10 minutes about HMS and she put her hands in the air and told me straight that "" she had little knowledge of hms, but if it was ok with me she would really like to learn with me."" I havent met any physio like this before.. theyve always just said that they know about hms!!

I feel that im finally being listened to.. especially with the new consultant ive got as well!!

Fingers crossed now for my first hydro- appointment in about 2 weeks time