Sticky Blood-Hughes Syndrome Support
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exercise - a good or a bad thing???????

Does anybody know if exercising is good or bad with pain issues? Ive just taken up tai chi as i find anything else like yoga or pilates aggrevates the pain as its more repetitive moves. Its a very gentle exercise and probably the least strenuous to do and i do walk to school and back twice a day pushing a puschair so im not saying i do nothing inbetween sessions(and the usual running round keeping a home and after a 20 month old and a 6 year old) I also do physiotherapy exercises to help with balance and strengthening. The first time i tried tai chi i had restless legs for a week,and the next tme i tried it ive been in constant pain with my right knee. Its all about holding positions and its a two hour session which i find quite hard. Embarassingly enough all the other people in the group are late 60;s - 70 years of age and cope fine - im 34!!! I know that i push through the pain barrier most days to do what i need to do so its not like im just wanting to give up, i think its perfect to help with the balance and strength problems but its afterwards i suffer and mostly at night. Im worried in case im aggrevating anything and should i just leave alone, or just put up with it and just hope that the very least its teaching me how to correct my posture so that i dont overcompensate with one side for the weakness in the other? A lot of people on here say they have the same probelms with random pain so i dont feel like its just me, the muscle spass seem to be worse too and not just legs but arms and even my back and sides spasm,thanks all. I suppose it does depend on wha sort of pain it is, mine are neuroligical nerve problems and overcompensation for weakness,but the pain in my right knee is searing and i cant sleep x

9 Replies

Hi emmaj.

As a chronic pain sufferer I sympathise with you. I went through similar situations trying to find a type of exercise that didn't cause me to hobble about for days afterwards suffering more than before I even did the exercise! I recently had a long consultation with a very helpful Doctor who deals with chronic pain management. His advice to me was that to do exercise correctly you shouldn't put your joints under chronic stress. He advised swimming to start with, which although was hard I enjoyed. Since then I have been doing exercises in a hydrotherapy pool where the water is very warm. This makes your body feel weightless and doesn't stress your joints. I won't pretend that it's easy because it isn't. However, I've persevered and nearly 2 months on am noticing a big difference in my muscle strength. I cannot recommend it enough.

I too also have bouts of insomnia due to pain but have found since starting this new exercise regime that I am sleeping much better too. Incidentally, I notice that you mention you have weakness in one side of your body. Well I walk with 2 sticks after having quite a few strokes, 2 thromboses and currently have blocked veins in my leg again to name a few things. So don't be put off exercise, you need to try and find something that suits you and doesn't make you weight bearing on your painful joints.

Good luck! Let us know how you get on won't you?

All the best from here InSpain xxx


I'm one of the ones that will say exercise is a very good thing mentally & physically.

When I was 1st got diagnosed 11 years ago I was in sooooo much pain I couldn't get off sofa :(

I fought this for about a year & now I am reasonaly active with bad days but hey the alternative was not an option for me!

If I have around 3 weeks off from exercise I start to regress to how I was in the beginning! so it must be doing something?

I have tried yoga...but I found my balance was awful!!!

I tried zumba...but my feet wouldn't keep up on bad days!! but it is good & you can tap out the hard parts & still keep up :)

I use the machines mainly & do sit ups etc at my gym, also swimming.....(with the treat of a chacuzzi after!! :) ) normally around 20 mins - an hour, 2 - 3 times a week.

I find it helps mentally & physically with this illness & I will continue as long as I'm possible to & would advize others to do the same if they are able, even if it's just a little...or even just swimming.

I am writing this from my mobile whilst on a machine at the gym!! :)

Good luck with it all Sue x


Hello emmaj

I have been a lifelong cyclist, including racing from 1969 until 1991.

I now cycle for pleasure but I am finding increasing leg tightness and discomfort nowadays. I'm not sure whether this is directly caused by APS or whether it is medication related, as it has come on since Ramapril was addedd to my daily list of medication, back in February.

This new muscle tightness and discomfort is a disincentive to cycling long distances - I like to ride anywhere between 25 and 100 miles in a day - but I intend to continue cycling as long as I can for the other health benefits that it gives me.

Best wishes.



Hi –I sympathise with you, because I suffer from the same muscle aches and pains, but try to keep up regular yoga, pilates, walking and swimming to keep my body working. Pilates and yoga need to be started slowly, just going to beginners’ sessions and then working up to the more strenuous exercises if you wish. Pilates, yoga and tai chi instructors are all very sympathetic to disability and encourage people to listen to their bodies and not to attempt to do anything or repeat anything that they don’t feel comfortable with. I have ‘flare ups’ where I feel that my muscles are protesting from the exercising, and the worst feeling is burning in my knees or calf muscles a day or so afterwards. I just take some time out, perhaps 2 or 3 weeks, then start going to 1 or 2 sessions a week and then when I am feeling better, 3. I used to feel embarrassed that my balance was poor and I have difficulty standing on one leg, but once you feel comfortable in a class it doesn’t matter and you can only improve. Yoga and pilates teach you to be more sensitive to your body and if you take it slowly, I am sure you will benefit from exercise in the long run.


I am an enthusiast for exercise because I believe it is responsible for getting me out of a wheel chair, up onto my feet and using only a cane (mostly for balance or if I am in a situation where I must stand in a line a long time or be on my feet a long time). Just getting through my hospital (being massively huge) is exercise for a day for me. Aquatherapy does give the best results in the fastest time for me. Also, my doctors have approved treadmill walking with auto incline, 45 min a day, but 15 of those minutes are 7 minutes slow "safe start" and same slowing down at the end. The treadmill does this itself. It also has "arms", but I can't quite coordinate it all at once. Also, I have to hang on for dear life at 3.5 mph. Believe me, my husband insists on being in the same room while I treadmill, it takes so much out of me I am a bright red and soaking wet, but by the end I feel accomplished and the actual exercise becomes easier after about 20 minutes. If I can get my attention focused (we usually watch The History channel or Sy-Fi) I can completely distract myself from pain while using the treadmill. Music helps. If I choose to use the treadmill that is about it for the DAY. It takes all my energy. So I'm exhausted for the day, but in less pain and my husband says better mood when I do exercise. Less pain/better attitude. However, I have friends I do things with, family obligations, a life to enjoy, things to learn and things to teach. So I don't wish to slide into exhaustion every day. Yet, I don't want the extent of pain that will happen if I don't exercise. A daily dilemma. I juggle it as it comes and stopped lending it too much concern. The disease will sneakily control you if you are not awares.

"What will, be will be", in the words of Doris Day. I'm sorry I can't spell it in Italian. Well, she sang it, I don't know who wrote it. After 12 years of being a chronic pain patient I just do what I can, when I can, if I can and I don't worry about the rest. I used to, but it was a waste of my emotions and time. Now I just take it day by day. I do meditation when I cannot exercise. This helps considerably with my blood pressure which is currently very wonky. So it needs my current attention. Lately, there are more days I spend in meditation until I can get my B/p under control. Then I'll pick up the treadmill again. It really bothers me when my blood pressure rises, because I know I can control that in my mind. I just need to give it the attention it needs. I guess I really learned to listen to my body, and when I don't - it gives me a swift, kick in the pants to get my attention where it needs to be.

Emma, it seems to me you have developed a good exercise regimin for your particulars of the moment. Don't forget grey haired people still think like they did when they were about 35, they only look different and they may be able to give you a tip or two. Pain is usually an old friend to them. Also, since this does worry you get yourself an appointment with a physiatrist (skeletal system/sports MD). Between that doctor and a good physical therapist, they can design specific water exercises for your maladies and teach you how to perform them safely. They also monitor your progress and sort of help you with flares. When you have a flare I have found them very sympathetic in getting me more aquatherapy. When I first started they had me in that pool every day. Now all I have to do is call and say I hurt, may I please have a work out and they usually make room. (They are certianly booked - aquatherapy is used for a lot!)

Know that you are not alone in facing the exercise dilemma. It's really hard to voluntarily put yourself in pain - to get rid of pain. But it's a Catch 22 situation. I think you should get that appointment with a physiatrist. It will ease many of the concerns you have. Then you won't have the stress of wondering if your pulling this or if that is safe. A good PT or psysiatrist will answer all those questions for you and dissipate your concerns. Best of luck, and I hope your pain is managed quickly and completely.

Warm wishes,



Many thanks canary for taking the time to reply to me, your very right in the catch 22 comment - I just really wanted to hear that people do get used to it and exercising does help in the long run. Like I said at the very least tai chi will help me ensure that my balance gets better,and that my posture is correct so aybe some of the knee pain I get will be less when i dont overcompensate for weaknesses on the left side. My instructor is good and my neuro physiotherapist is contactable for advice - though I will try a hydrotherapy pool I think. You seem to have really persevered and I do hope you continue to see the benefits, it seems that the more i do the worse it is but I still have the school runs to do and the house to keep,and at least if i learn to hold myself better it may help in the long run,thanks x


Hi Emma

I just wanted to say that I started Tai Chi back at the beginning of September and I've been finding it a huge help with starting to regain some suppleness. I couldn't cope with any other kind of exercise class - I tried a yoga class but I found it too difficult and painful for the joints - although I have joined a gym so I can use the pool as well. My Tai Chi class only lasts for 45/50 minutes so I'm wondering if yours is a bit too long - I do the Tai Chi class twice a week. I never feel any pain as with Tai Chi you don't push your body to do anything that it's not capable of doing - in fact I actually feel that it suppresses any pain for a while after the class has finished (my teacher says it's due to the fact that Tai Chi raises seratonin levels apparently). I am also about the youngest in my class at 46 - most are in their 60s, 70s and even 80s but everyone does it at their own level and it's not competitive at all.

From what you have said, I am guessing that my pain problems are nowhere near the same level as yours but I can totally relate to having to deal with children and housework etc as I've got a 6-year-old as well (yes - I know I'm an old mum - miscarriages! - one of things with APS/lupus/sjogrens unfortunately). As far as housework is concerned, I tell my husband that if a bit of dust is bothering him, then he knows where the dusters live LOL!

Lucy x


I was told to do Tai Chi for my balance by my specialist but could not find a class near me. Good job really as i would probably have fallen over and distrupted the rest of the class!!


Thanks Lucy and ellen, Ive had the lost babies too unfortunately. My 6 year old is great and helps out,but the 20 month old is enough exercise every day!!! Ive laid back a lot with the housework - and grab 20 min naps if i can while my son is asleep in the day as he has an afternoon one now - it seems that tai chi is definately the exercise to do then, maybe just do it for a shorter time than two hours then build it up. Balance is a major problem and our house is on 3 floors! I am ok while doing the class,apart from the knee but its later and at night its affected me, spasms/twitches etc..soemtimes just the day to day stuff i know ive done too much because i pay for it later but with doing a class at least i get time away fro the house and think of something else which is nice,and my mother in law comes to have my son while i go which is lovely of her because i tend to get all the weekly housework and washing done the days he's in nursery otherwise you just tend to do housework if someone has the kids and your stuck in. Losing my driving licence was the hardest part - very isolated, but there are always worse off out there,and im grateful for everything and abilities i have and on the outside i look perfectly fine so at least i can hide it!!


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