I have had my diagnosis for around 3 years I think, but joint pain for around 13 years. I have SI joint dysfunction, bilateral shoulder impingement, some clavicular wear and tear, L4/L5 bulges and a tear and bone damage to L5. I am female, 61kg, 164cm. Other minor issues - raynauds, lichen planus, low BP issues but nothing major.
The medial knowledge of HMS i find very limited, and i was met with much cynicism prior to obtaining my diagnosis with a doctor telling me there was no need to 'medicalize' things by giving them names. I think he thought if we didn't name it, it meant i didn't have the pain!! Following diagnosis I was advised that I should avoid running and weight lifting and just do 'light exercise'
After declining more and more and shoulders subluxing, I had bilaterial hydrocortisone to shoulders and set about a gym programme, predominantly weights, against the doctors advice.
I have to say, it is the best thing I have done and has reduced my pain by around 80%. My muscle mass has increased, my diet is healthier and I have more respect for my body than resentment when it does hurt. I feel so much stronger and in control of the illness now, but don't get me wrong, it still reminds me every now and then it is there.
My question is that I don't seem to be able to stop bursitis and I get this often in my shoulders and hips. I can't figure out which exercises are causing it and I don't feel any pain when performing exercise otherwise I would stop. I always ensure I am mindful of how my body feels, I research and obtain advice on correct form all the time and i think, get most things right. What knocks me off my feet is when out of the blue I just flare up again and then feel as thought I've caused it. Don't get me wrong my pain is far better than it was but I'd love to be able to overcome this and feel as though I'm winning. For my hips, I know the trigger and even though they say it must be a trauma or stress it really isn't- it can be sitting down/ driving for too long.
I think my shoulders are still a little unstable but I'm not sure which way to progress without hurting them. I've seen the integrated pain management/ physio team and they don't have any ideas other than to carry on doing what I'm doing and have hydro-cortisone if it happens- that's fine but I'm having my second out of the 3 permitted tomorrow so what then if i run out?
I really want to try and manage this myself and I do appreciate it is a chronic illness. I want to respect my body and nurture it not make it worse....
I'd love to hear form anyone that has similar issues and anything you can suggest to help.
Thank you so much in advance.