hello all. I was diagnosed with systemic sclerosis and secondary raynaurds in December ( a week before Christmas) however, luckily very early. I have a sudden pain on the inside of my hip (almost groin) when I walk, especially upstairs and an uncomfortable chest (like a weight is on top of my lungs) and was wondering if these are to just be expected ? I had barium xrays on Tuesday and have Lung function tests booked for February before returning to my consultant.
Any help would be appreciated. Thanks in advance
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Sylviaherring
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Hi Sylvia, regarding your lung issues...I would wait until you have had your lung function tests before you start worrying. There are complications of scleroderma that can cause shortness of breath on exertion but your investigations will pick any issues up. Your Consultant will be able to talk through this when you have your review appointment.
However, if you have had sudden onset chest pain and tightness that is not related to a cold virus, or bacterial chest infection then you need to go and see your GP.
Regarding your hip...there are many reasons why you might have hip pain, both related and unrelated to the scleroderma. It would really need your GP or specialist to review the situation so I would book at appointment.
Are you aware of anything different that you have done that might have sparked an issue? Any repetitive, traumatic or unusual activity? One of my colleagues is 21years old and she has hip pain at the moment after she spent a long time sitting and then started off walking too quickly to allow her tightened muscles to stretch out. This has resulted in many days of ongoing issues and she has no health problems! I am not sure of your age but just because you have scleroderma does not protect you from having other health problems such as osteoarthritis in your hip. Sometimes people with scleroderma can get inflammation in their joints and this is what causes the pain. Usually it will settle but go back to your specialist or GP if it does not. You may need an anti-inflammatory or similar medication.
You seem to know a fair bit about this stuff !! I normally run between 15 and 25 miles a week and am currently training for London Marathon. I am struggling to convince myself to go out in the cold right now! Any suggestions ?!
It would require a cattle prod to get me out running...and possibly a very attractive personal trainer with a large cylinder of oxygen for when I keeled over after approximately 5minutes of running :))))
Honestly Sylvia, if you have a fitness level that enables you to do up to 25miles a week, you are doing very nicely! And long may you continue! Good on you. It will be interesting to see what your lung function shows but you must have a pretty good capacity and gas exchange to do what you do.
I would think you have just pulled a muscle in your training, and honestly wouldn't worry to much, but you might want to go a little bit easier and really make sure you warm up well and possibly talk to whoever is helping you do your marathon training. Perhaps a physio session would be worth it.
Let us know your runner's number when you take part and we will all cheer you on!
Haha thanks Lucy. It's getting harder now. I have to slow my pace down otherwise I can't breathe and start to see stars !! My chest sorta aches most of the time now, has done so for the last 4 weeks or so but I am doing my best to make changes and keep going with my running as I'm sure it has played a part in keeping me mobile and strong. How on earth do you deal with the near constant coldness to the point of freezing all the time ?
I have been diagnosed with scleroderma since 2004, but I had inflammatory joints problems since 1994, and I have always had Raynauds since a child.
Are you commenting on the state of the miserable cold British weather or is your Raynauds just causing problems coping with it? How do I cope? Many many clothes. I mean layer after layer of them. if I keep my core body warm the rest of me (hands and feet) is much better. Some days I have so many layers on it takes me forever to go to the loo. If I wanted a romantic liaison it would take someone days to find me under all these layers ;)))) they would get fed up or the moment would pass while they tried to find me!!!
I also have some sheepskin mittens that are wonderful and I never go anywhere without a hat
You keep going with that running, it is what is keeping you strong. I do Qi gong (the health version of Tai Chi)...far less energetic, but good for breathing, posture, stress relief and muscle strength.
Sylviaherring I was wondering what you had found out about your hip/groin and breathing. Sarahjane926 has a post about the hip pain. I have symptoms very close to yours, sudden hip pain almost to the point of feeling like I popped it. It is more predominant when I stand a long time and my legs swell. It is excess fluid for me.
I had an unrelated surgery performed and in post-op the anesthesiologist asked me if I had COPD since he had some difficulty keeping my oxygen up. I had a CT scan on my lungs but no results yet. It ended up being ILD lung disease just starting. Since then I notice shortness of breath going up steps. It bothered me enough I bought an oximeter to check my oxygen levels. Normally on flat ground moving working etc. I stay around 94 to 97 but as soon as I go up a flight of stairs it drops into the mid 80's. I will be starting Mycophenolate in 6-8 weeks as soon as wound heals. It is specific to target ILD from Sclero. Just curious have you ever figured out how many miles you have run since you started you must be one fit person. It is important to keep up as much activity as you can. My first 4 months after diagnosis I was a ball of clay, no motivation, scared, etc. I read so much about staying active I forced myself and it has made a difference.
Hi rking50. The pain in my chest was/is acid reflux, which I now take meds to control. I notice the difference when I don't have them. The hip pain is a near dull constant pain I suspect because I run ! I ran 700 miles last year and this year so far just over 300 ! I cycle abit more right now as I found it easier than running on occasion
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but I am doing my best to make changes and keep going with my running as I'm sure it has played a part in keeping me mobile and strong. How on earth do you deal with the near constant coldness to the point of freezing all the time ?
RITUXIMAB FOR SYSTEMIC SCLEROSIS?
CREST systemic sclerosis 
