Hydrotherapy or land Physiotherapy in helping Manage EDS pain

As you probably know, Physiotherapy is the main treatment on offer for EDS sufferer's as it can help with improving muscle endurance and strength which is important in stabilising joints, but also can help balance and coordination, re-educating posture and gait to avoid or correct abnormalities in biomechanics, help relieve pain through soft tissue work and gentle mobilisations. It also works on the core which is essential for stability throughout the spine.
The problem that seems to occur when people talk about physio is that, the therapists are taught through their training to get people back to strength quickly and with EDS we need to do the complete opposite, by working gently, using the correct muscles and over a longer period of time, progress is often slow and can cause flare-up's along the way, especially while the muscles are weak but this should settle as they get stronger. Many physio's and patients get frustrated that they are not seeing any progress with this process and give up too soon, leaving the patient to search for another therapist who can help.

I have been having physio on land for years on and off with different physio's and some were really good and others didn't want to touch me. It was causing flare ups each time I was having it. I expected to have some degree of discomfort but not severe pain. We only did really basic exercises in lying and sitting, as instructed by a specialist physio in Hypermobility, trying to switch the correct muscles on but the energy this required wore me out, as my muscles fatigued very quickly. I would also have soft tissue massage on my neck and upper back to help the continuous spasms. I would still be exhausted and in pain the following day.

My current physio suggested I try Hydrotherapy, as it can be useful if weightbearing and land exercises prove difficult or too painful. The buoyancy of the water helps to support the body and it is kinder on the joints and the warmth relaxes the muscles making movement easier. I was a bit concerned at first about my PoTS but my physio said people with PoTS had been there before and had no problems, so I agreed to give it a go.



Session 1 

I was a bit nervous about getting in the pool as I had a bad experience in the past while I was on a pain rehab programme, almost passing out when I got out the water and having to be monitored on the hospital ward afterwards, this was before I was diagnosed with PoTS. 

An assistant collected me from the changing area in a plastic chair that had a sling on so they could hoist me into the water more easily, in the past I struggled to walk as my legs were giving way, this was a rather interesting experience being put in a hoist, one I had never had before!. I felt a bit strange as I was hanging in the air above the water but my physio was there waiting to take me.

As this was my first session, my physio wanted to build up my trust in her holding me in the water and to get me to relax as much as possible while she moved me, my neck wasn't happy me being on my back and started really aching, so she tried a collar on but it made no real difference and I started panicking as I wanted to be upright, my physio was trying to calm me down and get me to relax and close my eyes, which I couldn't do being in pain! she let me be upright in the end and hold onto the side as my heart was starting to race. I felt much happier after this! I remained upright for the rest of the session with her holding me and just doing a bit of cycling with my legs and moving my arms out to the side, she did some mobilisation on my spine. I was then hoisted out of the water, which made me feel a bit weak and lightheaded possibly due to my PoTS! and wheeled back to the changing room to recover. I felt exhausted afterwards and my neck and back were a bit sore. I will be going again next week.  


Session 2

My chest wasn't very good today due to the humidity recently so my breathing was a bit laboured, luckily my physio specialises in cardio-respiratory problems so I knew I was in safe hands. They hoisted me using the chair today instead of the sling, not sure why other than it was less traumatic for me. My physio was concerned about my breathing at first and was trying to slow it down before she did anything else with me. She put the collar on again which my neck does not like and it started hurting again when I was on my back, she took it off and used her arm to support me instead which was a bit easier but still I wanted to be upright and got a bit panicky, we went to the side and she put a buoyancy belt round me which aided with keeping me upright to take the stress off my joints. I was exhausted afterwards and had a really bad flare up of my shoulders, elbows, neck, back and I could barely walk. I obviously did too much in the pool without knowing, that is the problem with fragile tissues, you can overstretch so easily. My physio was very good making sure my limbs were not doing anything to injure them and would keep pointing this out, due to my poor proprioception I am not always aware what my body is doing.


Session 3

I have had a long gap since my last session due to chest problems, they used the sling hoist today as I hurt my shoulder last time using the chair. My physio put the dreaded collar on again and had me on my back but she was holding me, I was ok for a short time before my neck started complaining so she took it off, she got me doing some core work as I am so weak, by getting me to put one hand out of the water a bit and try not to roll, this was hard, then she did some resistance work by getting me not to let her push me, I struggled with this a lot, in the end she used a belt round me to help and tried to get me to loosen up as I am so stiff. I was a bit worried I might injure something as it is harder to tell in the water, then she got me just doing some light kicks with legs straight with her holding me, I did some breathing work as well as I was breathing fast at times. We finished by doing a little bit of walking holding onto her shoulders, then I was hoisted out.

Pool noodles are great for sitting on and doing cycling with your legs

Session 4

They hoisted me in the water as normal and used the dreaded neck collar, but shortly after being in, I started over breathing and my heart was beating very fast, my physio tried to get me to slow my breathing down but I didn't seem able to for some reason and I started to get tingling up my arms, luckily I had the right person with me. She got me over to the side so I could hold the bar and kept asking me questions about my symptoms and got me some water. Things started to improve after a while and she put a belt round me and got me doing a little bit of resistance work and she also loosened me up as well. We had a chat about my PoTS and how she is not surprised how I don't have much energy in the water and my muscles fatigue quickly. When they got me out they made sure I was pumping my feet to help my PoTS symptoms. I was shattered when I got out and very unsteady.

Session 5

They used the chair today without the sling, which was probably better. I had a trainee physio in the pool as well. My physio did the usual things getting me moving through the water holding me, she put the dreaded collar on which felt like it was strangling me then got me on my back but my neck started going into spasm as normal and really hurting so she did some work on my neck to ease it. I did a bit of resistance work by just using one hand slightly out the water and trying to use my core muscles to try not to turn, however I always struggle with this one then I had to use the other hand. She tried to get my pelvis working better by doing some tilts with it as there was not much happening there. I got a bit short of breath not sure why other than possibly the exercises, she took me to the side for some water. 
I finished the session with some walking holding onto her shoulders but this might have been too much for me. 
They hoisted me out of the pool and I felt funny and almost passed out due to my PoTs, my physio raised my legs onto a chair to get the blood back to my brain and got me into the changing room and into the shower to cool down. I was quite shaky and exhausted but my colour started coming back.

Session 6 

They got me in the pool in the usual way. She didn't use the collar today but tried some float thing that helped a bit. I didn't get any spasms today. I did the usual resistance work and she pulled me through the water getting me cycling with my legs and scissors and she did some mobilisation of my spine. I did a bit of walking holding onto her shoulders but I struggled and was all over the place. My PoTs was better today, no funny episodes. She got me doing calf pumps as they hoisted me out the water. This was a really good session and she was pleased with me.

This was the float aid my PT used for my neck

Session 7

They used the sling hoist today, I did the usual resistance work, she put the dreaded collar on but had it mostly deflated but I still didn't like it and my neck started complaining. I tried to put up with it. I got tachy and short of breath so she took me to the side for a drink. She thought it must be anxiety as we were only doing things in sitting taking the stress off the heart. I did some squat to stands and a bit of shoulder work, lastly she got me walking holding onto her shoulders but I think it might have been too much as when they got me out the water, I was shaky and very nauseous on the way home. I knew it was my PoTS when I was in the pool.  

Session 8  

They used the sling hoist again and I asked my physio if I could use the yellow float as it was better than the collars, at first it seemed ok but soon after my neck started complaining again and really started going into spasm, she was trying to release it as she could feel it wasn't happy. We had to abandon it and she took me to the side to do the usual resistance exercises which I was terrible at, I did a bit of walking holding onto her shoulder and the bar which I found quite hard and made me short of breath so I had to have my drink, I also did some squat to stands, they hoisted me out and I was really shaky again and felt weak. 


Session 9 

They used the chair hoist again, we did the usual exercises using the yellow float for my neck, which I can cope with for a short time before my neck hurts. I was useless at the resistance exercises due to my core strength being so poor. She loosened my back as I was very stiff. I wasn't my usual self today as I have been suffering with quite severe gastro issues recently so this was playing on my mind. 

Session 10

They used the chair hoist today, my PT used the yellow float again as I find it better than the collars. She got me doing a bit more with my shoulders today, trying to get them sitting in the correct place, I found it difficult. We did the usual resistance exercises which I am useless at and at the end she loosened me up as I was so stiff by moving me through the water in different directions. She got me floating on my back but I kept having twitches, she wanted me to be still. She gave me a hip float to hold me up so I could do some cycling with my legs but I found it too hard so she scooped me up and took me to the side.


Session 11

I was so pleased to be back in the pool again as it had been a while due to being in hospital having a PEG-J inserted. I had to make sure my tube was properly sealed to make sure no water entered. I went in the pool via a chair, I was very weak and just did some gentle floating but I got short of breath so they hoisted me out. I got a bit potsy and my muscles were jerking.

Session 12

They hoisted me in from my wheelchair which was better, I did some floating and my physio tried to loosen me up a bit, my neck kept going into spasm again when on my back so she got me upright. I lasted a bit longer than the last session

Session 13

Hoisted from my chair again, she got me floating and doing some resistance work, I also did some standing holding onto her but think it was too much. I almost managed a full session. I had another physio in the water with me observing what we do.

Session 14

I entered the pool in the usual way, then did some floating and loosening up.

Session 15

I was really stiff so she loosened me up then got me resting my head on her shoulder as the collar doesn't do much. We did floating which is relaxing and resistance work which I find difficult as my core is weak. 

Session 16

She got me standing which I think was too much, I got bad spasms which she tried to release. I was coughing quite a bit. 

Session 17

My breathing was not great again, I didn't last long in the pool today.  

Session 18

Had a good session as I was in control what I wanted to do, she loosened me up, did some core work then got out. 

Session 19

I did my neck stabilising exercises, I struggled with my balance so she had to hold me.