Hi Everybody,
Just new to this site. I have Churg Strauss Syndrome and have recently been suffering from muscle pain in both arms and the TOPS only of both legs, both consultants have been dismissive. Does anyone else suffer from this and does anyone know if this is related to CSS or something else.
Regards
Alybill
Hi Welcome to the site.
You don't say which types of consultants you see and how else the CSS has affected you. A lot of people have different aches and pains which seems to go with the Vasculitis of all different kinds so it is difficult to comment.
I have MPA and have nerve damage. When my Vasculitis was active I lost a lot of muscle in my arm and legs so maybe this is the reason. I went for physio and the muscle has built up a lot over 2 years.
Consultants do seem to dismiss things but I have learnt that they do take note even if they can't do anything about it. I think they hope these things will improve when the meds kick in.
Have you had CSS for long and what meds are you on? Could you ask for physio if you feel this could be the problem. Having said that temperature changes affect my aches and pains so I don't know what that is all about. I survive on paracetamol and the occassional Tramadol.
I am sure you will get some more helpful answers soon.
Best wishes
Lynne
Hello,
I have had Wegeners for 6 years with one relapse.
Throughout most of the time I have had joint and muscle pain which worsens if I undertake physical stuff such as golf or gardening. Arms,legs, wrists, shoulders, knees have all been impacted.
I consider that it comes with the Wegeners and my Rheumatology Consultant seems to be relatively unconcernedbecause it is a symptom of the illnes.
HOWEVER when I raise my prednisolone dose from 5mg to 7mg daily, the aches and pains significantly reduce or quite often disappear. Of course most consultants want us to reduce our pred dosage to a minimum of even zero as there are some nasty longer term implications asociated with long term high dosage usage.
When I seee my consultantt in Jan 2013,he will want me to reduce slowly back down to 5mg BUT I will refuse, preferring a higher quality of life for the years I have left. This dosage experience for me has been tried and tested on and off for the last 4 years. IT WORKS for me.
I hope this helps
Hi alybill,
I have had CSS, for 4 years and YES I do suffer from pains in the muscles of both my arms and both thigh muscles. Some days it's worse than other days but it never goes away. I cannot open stiff jars or hold my arms up for any length of time. I sometimes have to get my husband to wash my hair.
At first I thought it was from taking Prednisilone but I stopped taking that in April of this year and I still have the aches and pains just as bad. Therefore I guess it's part of the Vasculitis?
If there are any other questions you may have about CSS, just give me a shout and I'll be happy to tell you of my experience.
BerkshireBird, many thanks for your reply, I to have suffered CSS for 4 years, sometimes I think any little ache or pain is automatically CSS and I just wanted to make sure it was. You are so right, it is better on some days than other its just getting the DRs to agree
My CSS is still active despite being on MMF 3g x 2 day, I saw a rhumatologist and a consultant at a vasculitis clinic who were dismissive of muscle pain. Interestingly Paul my prednisolone was reduced from 12.5mg to 10mg and I believe this has been responsible for the muscle pain so thanks Paul. Addenbrooks has applied to my trust for funding for Rituximab infusion, 6 weeks has passed, apparently this is the wonder drug, ever hopeful. Glad I found you all Alison
Hi Alison
Although I believe muscle pain, aches and weakness is all part of vasculitis, I do also beleive that reducing predisolone has a big impact. I have been trying to taper down not very successfully for a year and a half and the bigger the jump down in dose the more intense the muscle aches and pains have been, along with other symptoms. If you jumped straight down from 12.5 to 10mg that is a huge adjustment for your body to take. I can only tolerate a 0.5mg drop down each time and even that gives me symptoms for a couple of weeks. Our consultants all want us off predisolone and while I understand their reasons it also has to be balanced by quality of life now.
Jenny
Hi Sandra, I have had WG for nearly 11 years. And I have ached all that time. Some days are worse than others. I had rituximab in June which really helped but the biggest difference was stopping statins. I had a few wonderful months then I was put back on them. Surprise, surprise within a few days I was crippled up again. Be careful with the pred as it has caused diabetes for me, and I am still on it! Hope you get sorted as I know how tiring it can be. Wishing you well, Christine x
Hi, I'm in my 4th year of CSS and constant stiffness in hands and muscles, both arms and legs. My neuro consultant advised after a post diagnosis mini stroke that the CSS had damaged my nerves, saying that it can take up to 2 years for the nerves to repair themselves. My muscles, particularly arms, are always stiff and partially numb. My fingers are permanently stiff, more so in cold weather to the point that it is difficult to use them, particularly my right hand as CSS started in this arm. I find that when doing tasks I tend not to feel too much discomfort until later unless, as BerkshireBird experiences, I use my arms above my head. I have very poor muscle strength in that direction. This I understand is all due to the damaged nerves not being able to fully repair themselves. Once relaxed after any activity my arms and legs seem to gradually go into overdrive, whthe discomfort level seeming to be proportional to the amount of activity. I would take an extra dose of pregabaline and paracetomol to quieten it down, which could take a couple of hours (another late night lol). Occasionally I will need to take tramadol but only one capsule as two make me itch. Muscle loss is most evident between my thumb and index finger but I still have a good grip to open jars. Pacing oneself is definitely the key to avoid too much discomfort though on occasions my CSS has a mind of its own, hey ho!
Anyone suffer facial pain?
Joint pain and WG
does anyone get swollen fingers and burning sensation in their hands?
