Sticky Blood-Hughes Syndrome Support
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Trying to improve my exercise level

Hello my much of you know me .i ve been having clexane 1500ui per day to try improve my migrains..and having coricoides 10mg a day and plaquenil since last jenuary i can say i feel quite better but i try to increase my exercise but thats impossibke. I know is gonna be imposible back to my 3 hours of spinning cycles (i use to do every day before my diagnostic)...i was always a good sportman..i love it it was my i do e exercise in water thats improves my joi ts and i walk for hour and half without hills. But when i try to do more my muscles doesnt work..they contract they start to do hard and it pains..and besides later i feel if i run a marathon...i have having enzime q, magnesium , potasium,,, but it looks doesnt work...

Does anyone happens the same or us taking some vitamins to improve this???

Thank you everyone from spain

9 Replies

Hi, I too find it hard to exercise as I used to, I have learnt to pace myself, if I manage to walk into town, a twenty minute walk, where if my joints are ok, I get up to some sort of speed, I treat that as the warm up, or if I am dropped of and walk back. I have various pieces of exercise equipment and I go on each one for five minutes (four machines), and if ok, repeat this later in the day, this is working for me. Don't be too hard on yourself. If I over do it, I can be the next day in bed and the day after, even then I try and get up and move about for the obvious reasons. I do make sure my D, iron b are at optimum levels and my tiredness has improved quite a bit since sorting out my Thyroid, which I might add the NHS did not pick up due to how unreliable the tests are. MaryF


Hi, I agree with MaryF. I do not know how old you are. I am 70. I try to walk up to one hour a day. Go up the stairs sometimes and once a week a senior-training for 1 hour.

You have to listen to your body and also rest quite a lot. I think what you do is fantastic. Eat also healthy food.

Best wishes from Kerstin in Stockholm


Hello Salva.

I have the same problem and I find that C0-Enzyme Q10 (200mg once a day) helps with it for me.



I used to do exercise three times a week and even managed to continue with my step aerobic class until the month before my eldest son was born. Recently (in the last 5 years) my weight has increased and I have had to give up on my sports centre membership as I am finding it just too exhausting and my joints ache all the time, particularly after rest and particularly my ankles. I have recently started on Plaquenil but am desperate to get back my fitness levels and lose some weight. My diagnosis of Lipoedema hasn't helped either as the weight appears to have stacked on since my hysterectomy. I am aware this increases around changes in hormones. I'd be really interested to know what help is out there generally. X


Thanks to everybody, it is quite desperated i am only 37...what am i able to do when i will be 50 years old.i use to do sports, i love sport and now i only able to do low exercise ( walking tha all) i try run slowing but my muscles became hards like a stone...

Like you say i have to learn for liseting my muscles otherwhise like Mary says the day after i would be on bed resting all day.

Thanks everybody.

Salva from spain


Hi Salva,

I hope you will be kind to yourself and understand that you are doing just great. Perhaps as you are so young you can find another new big interest in life. That I hope will happen to you. We can do so many things that we do not know ourselves. We just have to try.

Best wishes to you from Kerstin


And has your Thyroid been correctly looked at? MaryF


The other thing (that I thought wouldn't help) is a calcium supplement. I've just come back from 6 week trip in Europe and didn't have enough supply. After about 2 weeks my joint pain is back and night cramps in both calf muscles are very painful. Anticoagulants do leach calcium out of your system so it's worth a try as a cheap fix. Worth pushing your doctor to check everything!


Hi salva76 - I have been really struggling with the same issue - I started jogging more regularly about 6 months ago to manage stress, to sleep better and also to feel like life goes on despite this illness... Other than that I do pilates once a week, which is really great for the joints!

While I've got lots of other positive results with the jogging - I am struggling very much with muscle pain. Much of it I have been able to get fixed by working with a great chiropractor who has helped me to find the right stretching to do before and after exercise. Now however, I have such serious pain in a muscle near the hip joint that I am hardly able to walk... :( I have been told as above, vitamin D, C and A are important for muscles, drinking lots and lots of water. I'm 39 and find this just as frustrating as you describe. I had all my vitamin levels tested lately and all is in order but the pains continue. I really want to focus on being as healthy as possible and try to fix any deficiencies with diet & exercise rather than pills... But I am not sure if this is an option for us.

@MaryF - can you explain how the Thyroid would relate to muscle pains?


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