Patients Ankylosing spondylitis
Topic of the discussion
Posted on 21/07/2019 13:01
Hello, I’m Alan, In January I was diagnosed with Ankylosing Spondylitis, Tracing the symptoms It seems I have had this since I was 15. I am now 56, so that is just over 40 years (I told them it hurt, but they all said, “There’s nowt wrong wi’ you, get on wi’ it.”). The situation now is that I have all 12 of my thoracic vertebrae fused into two lumps. My spine has been broken above and below the fused points. My mobility is seriously limited. I have had my mobility measured, tomorrow I will ask for the measurements so we can all see the before and after results
My specialist has recommended that I should be given intensive physiotherapy. Which in this area at least, means two weeks in the Ross Memorial Hospital in Dingwall. I am to go in tomorrow. It occurred to me that knowing what this treatment is like, and how effective I find it, might be of value to others, or at least give you all a good laugh at my expense. Therefore, I have decided to make a day by day blog of Physiotherapy Rehabilitation I am about to undergo (You lucky lucky people you).
Being new to blogging anything I ask for your indulgence. I hope this is useful to some of you. If you find my humour inappropriate at times, please remember, it is me that is being bent all ways that my body doesn’t want to go, I am the one who has to cope with this somehow.
I also confess to a little trepidation from the start. Mike, a good friend, (that might be revised to “acquaintance” yet) went through this same rehab 3 or 4 years ago. He will not be reading this so I think I can say he is something of a wind up merchant. Scratch that after talking with him I’m bloody terrified! Despite this, I am approaching it as a fresh start for me.
Mike married his long term partner yesterday; all the physiotherapy department know both Mike, and his partner Rhiannon. Mike as a former victim, and Rhiannon as a physiotherapist, and now one their bosses. (If mike found it torturous and Rhiannon is their boss, what hope do I have?) However, I was one of the officials present yesterday; the official photographer. All the staff on my rehab want to see the photos. I might have just the leverage I need.
Right folks, I’ve got bags to pack, and I think I’ve waffled at you for longer than anyone should be forced to endure. So I will wish you all well and say,
“Tschuss bis morgan!” (Goodbye until tomorrow).
Beginning of the discussion - 23/07/2019Physiotherapy Rehabilitation for AS https://www.carenity.co.uk/forum/ankylosing-spondylitis/your-opinion-on-ankylosing-spondylitis-treatme/physiotherapy-rehabilitation-for-as-2903
Posted on 23/07/2019 08:52
Well my first session was scheduled for 9:30 according to the timetable I was sent, but my admission was not until 10:30. I have no idea what I missed.
So far I have been prodded and poked by everyone and anyone, questioned by rejects from the Gestapo school of cruel and unusual punishment, and generally treated very well by some lovely people.
They wanted an up to date set of blood test results. Well I don’t bleed for just anyone. It. Took two nurses and three attempts to get a needle into me. Well that is not true they all got the needle in. They just didn’t hit anything red. It wasn’t so much “taking a blood sample” as prospecting for one.
Surprisingly lunch came next and was quite passable. Something resembling minced beef with peas and watery mash, followed a bowl of soup with real chunks of identifiable veg in it. There was a pudding as well, jam and coconut tart with custard and ice cream, Being a good diabetic I resisted manfully. No really I didn’t have any, not one bit. Instead I had a bananananana (I know how to spell it but am never sure when to stop. It was very… well… “bananaish”. What can I tell you about bananas that you don’t already know? They can be used to ripen tomatoes in bag, perhaps?
Now I am on something of a “down time” before the torture really starts. As they have taken my timetable away things have degenerated into a bit of a magical mystery tour. I have no idea what is up next
On the good side I am being permitted to administer my own medication. It is monitored though, so I should actually try to take it at approximately the right times.
Someone has just mentioned a “Drugs cordex”. I have no idea what that could me, but it seems dreadfully important. Especially as I don’t appear to have one. My paperwork has already been marked “Warning - Sense of Humour”. These are the kind of people that but “Must have GSOH” on dating sights, then put warnings out when they encounter one.
Well this is, so far, not what Mike warned me about. It has been not too unpleasant, apart from the blood letting.
This is good the tea trolly has just arrived. I could get used to this. Though they do need to learn how to fill a mug. Some decent coffee wouldn’t go amiss either.
There appears to be 5 other people in the unit. At least there were 6 of us at feeding time. Not sure the escape committee is going to find many members there. On the good side there is an acceptable looking hostelry within 3 minutes stagger of the unit.
Well that seems to be that for today. Maybe something more will happen tomorrow.
Posted on 24/07/2019 10:07
More sample taking, not blood this time. Enough said. More forms to fill out. Surely they will diminish, please.
The first physio session was baseline measurements of how much I could move in various directions. The answer being not a right lot. However, I had these done a week or two ago when I visited. I am still waiting to get these numbers. Instead I was to see the occupational therapist. She had me fill out one form then said we would use that to fill out the next. An interesting one, setting out what my goals and hopes are for this rehab are, and how I will measure my success in attaining them.
We never got that far. While I was filling out the first form she excused herself and went away. I have no idea what I have done, but she went home, sick. I do hope I haven’t broken my occupational therapist!
After that it was off to the hydrotherapy pool. My first taste of the pain to come. First was just walking around the pool, then with my arms out, palms facing forward to force my arms back against the water. Then some twisting and turning movements using a float under each hand. That was just the loosening up. The pool is very warm, and I found I could twist much more in the pool than is usual for me.
Holding on to the side I was asked to walk back as far as I could stretch on my toes. Then lift first one leg up then the other. That one hurt. To rest I would be permitted to bring my knees forward into an upright kneeling position. I found I could manage two repetitions of raising my legs, then had to rest. Resting was almost as painful but down the front rather than the back.
Finally came three exercises to do holding onto the side in a corner. Let your legs float up then swing both legs from one side to the other, then cycle, then apart and together. This wasn’t so difficult for me. I managed two lots of ten repetitions of each. That was the end of that session.
Years ago I took classes in Ti Chi. I found that these exercises felt like they were doing much more for me when I adopted a Ti chi breathing pattern, and “grounding”, while doing them.
Staff shortages meant no afternoon session.
Tomorrow the consultant rheumatologist will visit. I’ll find out from him, hopefully, what can be achieved.
I really hope I haven’t broken the occupational therapist.
Posted on 25/07/2019 18:04
Day 3, Well I was certainly moving easier this morning. Good news on the occupational therapist. I haven’t done any serous damage she will be back tomorrow. Still I was worried.
This morning I discovered they have a special torture chamber called the gymnasium! Wow they have some really specialised torture equipment. I am not entirely convinced that people don’t leave here better through fear of being sent for more “treatment”.
I never thought sitting in a chair could be so difficult. They have a special sort of whoopy cushion that is, thankfully, silent. What it does is unbalance you. Making you work very hard around the middle section to stay balanced. Various exercises on that made me work in ways my muscles just haden’t for so long. Then into the gym. The physio has all sorts of equipment here but it isn’t necessary. They can hurt you with something as simple as a wall. Standing with heals, bum and back against the wall. Try looking up as much as possible. It’s surprising just how much it hurt. Add to this hanging from the wall bars, and turning a ships wheel, and you can get moving in some waysI haven’t moved in a long time.
The consultant paid me a visit in the afternoon. Not a lot to be said. I found myself defending my GP’s decision not to put me on anti-inflammatory medication. It’s not nice being piggy in the middle. He seemed to accept the reasoning. My GP thinks it will not be worth the risk of internal bleeding it could cause with the Riveroxaban I am already on.
A visit with the diabetic nurse and the dietitian are being arranged, just because of the total lack of any information I have been given. With that the third day endeth.
Posted on 27/07/2019 14:16
Day 4, The routine establishes itself quickly, Now I know where to be when without being told, though they still make sure I am up for breakfast.
Today I had a visit from the diabetic nurse. She has changed my Metformin from 1 tablet 3 times a day to 2 tablets twice a day. I have been taking them morning noon and night. It turns out that this is wrong. I should be taking them all with meals. another bit of information I was expected to know by my GP. Anyway, my blood has been reasonable since I came in here.
Absolutely shattered from the hydro and physio today. It is great to get moving again though. I’ll need to keep moving when I get home. Changes will have to happen. Big changes. I am looking forward to being able to sit on my sofa again though. For the last five years it has been too low for me to get off without sprawling all over the floor.
Some of the smallest movements in these exercises make the biggest difference. The first day in the pool I could do no more than 2 leg raising exercises with each leg before having to rest. Now I am up to 10 each leg. Definite progress.
Posted on 28/07/2019 08:50
No hydro today so it was two sessions of physio. When you are doing these exercises it doesn’t feel all that strenuous. Half an hour later... Wow! I am moving a lot more freely and can rise from a chair better than I have been able to. My walking sticks are all marked with a piece of tape 17 inches from the bottom. That is the measurement for a chair seat that is comfortable to rise from. Now I can manage at least 3 inches lower with no problem. When walking I can get much further before my back starts to spasm. This is working for me. I know what I hoped for but not what to expect if that makes sense.
I will be continuing the hydrotherapy exercises whenever I can. I usually travel into Inverness about 3 times a month. Hopefully I can extend these to include a session in the puffin pool. I wonder if the pool in Golspie might be a good idea? I must ask the physiotherapist.
I have booked myself in for an extra session tomorrow. I may also do a session in the gym. The gym exercises are very simple. I can work around a little circuit of 4 exercises. Doing a few reps of each several times feels better than lots of one.
Posted on 29/07/2019 11:01
@Crackaig Thank you so much for you for sharing your experiences with everyone on the forum.
Have other members ever considered this treatment? Or, have you already tried it? Did you find learning about this experience? Please share :)
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Posted on 29/07/2019 23:30
Days 6&7, Not a lot happens over the weekends here. The pool is open Saturday Mornings so I got in an extra session of hydrotherapy. Sunday we had a little outing to the local Tesco to sit and drink coffee in the café.
The one thing that does happen on a Sunday is we all get weighed. I had lost a little over 4kg in the first week. I hope I can keep this going.
Posted on 29/07/2019 23:31
Day 8, Being diabetic I have been keeping a close eye on my blood sugar levels. Encouraged by the weight loss last week, I had less than usual for breakfast this morning. This was followed by a double session of physio. My physio has developed into a form of circuit training. All low impact stuff, but still energetic for me. After this I felt quite shaky so I tested my blood sugar level. 5.0 is as low as my GP tells me it should be. I told one of the nursing staff, who tested me on their meter. That came out at 4.4. They were not overly concerned as they don’t consider you to be hypoglycaemic until less than 4. Close enough though. Lunch helped, and in the afternoon I rested, rather than do the extra session of hydrotherapy.
Before diner my blood was 5.6 so back I the range I’m aiming for. Or so I thought! At ten tonight it was back down to 5.2. Not high enough to keep the nurse happy. That is why I am now writing while chomping on two rounds of toast. This is going to put my blood sugar through the roof. Bread does that to me. Still they are in charge. And I have got an extra cup of coffee out of it, so I’ll count that as a win.
Posted on 19/08/2020 09:33
@Crackaig Hello Alan, I thought I would pop in and see how you are doing? Have you continued your physio since last year? Overall did it help you with your AS?
Hello all, have you seen this discussion? Have any of you tried physiotherapy for AS? Have you found it beneficial? Feel free to exchange and share your experiences here!
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