Do you or have you suffered from either "sev... - Vasculitis UK
Do you or have you suffered from either "severe" fatigue or "severe continuing" pain, or both. Please leave any appropriate comments.
Suzym2uModeratorVasculitis UK86 VotersPlease select all that apply:
I can fall asleep at any time, anywhere!! I get regular pain, but not continuing. My pain is in my lower back, which stops when I sit down. Also have head pains some times, pains in toes (peripheral neuropathy?) also in rectum!! And of course joint pain intermittently.
I get headaches at times, but they are rarely severe. Fatigue is a huge problem for me though, and has been for 20 years now. It's worse during relapses/flares, but always there, and never goes away.
My pain is in my back and left side continuous sitting laying down always there. Fatigue is moderate but is really bad when I am flaring and unwell. Keep on keeping on though
Severe fatigue was/is the main problem - slightly better on Pred. Most of the pain I rate as discomfort but that might just be the way I see things. Have never quite reached the pain of second stage labour which is my '10' when asked how I feel on a scale of 1-10.
Severe fatigue was my first symptom. Thankfully now I am well and fatigue is less of an issue
I am always in pain . Worse when trying to do everyday things . Some is in my joints , some is i believe muscle and some in my bones . I am always tired which isnt helped by the pain as then i dont sleep well at night
Me too, I am always in pain, back, sciatic pain, knee pain too. I also have severe arthritis in my neck and both hands, this makes it really hard doing things like getting dressed or changing the bed, I can't lift a kettle or saucepans at all, i would scold myself LOl. It is hard to sleep at night as I really cannot get comfortable at all, hence to say I am always tired too. Luckily I do have a supportive doctor and just been referred back to the pain clinic for injections...watch this space, LOL. x
Suffered from both
Suffered from both
Suffered from both
Suffered from both
Suffered from both
I don't quite fit the pain & fatique levels in the poll! My levels have varied from severe to moderate and also mild! I haven't yet voted because of this.
yes , my father Ramesh gogia has been diagnosed with leukocytoclastic vasculitis .He is under regular Prednisolone 60 mg and mychophenol 500 mg dose,but nothing is able to mitigate the pain. he says that something about shooting pain , like a needle pointed into the skin.He has many ulcers on his leg and is very painful
My pain & fatigue are better described as moderate to severe, as they differ sometimes hour to hour. I voted severe because in the end, I'm unable to return to work & that has resulted in severe consequences!
Thank you for this poll. I'm not alone after all.
Dear Susan,
There doesn't seem to be an answer that suits me- 'Little to no pain generally with moderate, to occasionally severe, fatigue'. Can this option be added please-I can't be the only one surely.
Kind regards AndrewT
Andrew, you are not the only one! And your description is exactly what I need too. My pain is mainly from claudication, so it's only there if I do something with my shoulders or arms such as reach up to a high shelf or change the sheets and pillowcases. I also get pain in my back/chest if I walk for more than about twenty minutes, or do more than about twenty minutes gardening etc. I know both will subside if I rest, so I can pace myself pretty well. Fatigue is less predictable and harder to manage, though I do know that a 'busy' day has to be followed by a quiet one.
My pain is a bit less predictable than yours Bronte, except when I badly bruised my foot!. However your description- 'of an active day followed by a lazy day' is me to a tee!
I put a question about 'constipation' recently-I think we all get it sometimes-and have had some interesting replies. Maybe one to 'check out'.
Hope that you are not/do not suffer too much.
Best wishes and Happy New Year 2015
Andrew
I am always in pain and always fatigued so much so I have now been diagnosed with Obstructive Sleep Aponea something which I have had before due to weight gain from the steroids in prednisalone and the infusions of steroids I am given every six months before I have my rituximab. I might add what also makes the pain more severe is weight gain the only other thing I am on for my WG is methotexterate 10x 2.5 every Thursday which makes me bloat and feel sick for a couple of days and I am still having regular admissions into hospital the last was in November for fifteen days due to an infection complicated by my WG.
In 1982, I was 30 years old with a responsible and active job and a big mortgage. I had a number of infections and became exhausted. I had all the symptoms of what was described at the time as ME. I said this to my elderly female sole practitioner, GP. She was scathing and rude referring to it as 'yuppy flu'. Each time I went to see her, I became more frustrated and tearful. I gave up my job and sat at home alone, depressed and suicidal. She said I had 'thick notes' and treated me as though I was a hypochondriac. She would not give me a sickness certificate and insisted I saw a psychiatrist who then insisted I went into a psychiatric hospital for tests. I refused and did not want their drugs which had unknown long term side effects. The relationships broke down. I had no income with debts piling up. The treatment was extremely judgemental and abusive. I was asked to see a nurse for counselling "What is this word you keep using - distressed!" she said impatiently! It was hell on earth and I was only 30 years of age with a fiance who I hoped to marry and have children with. 30 years later, I have PMR and GCA, I'm still in the same situation, as though I am making up symptoms to get attention. My mental health breaks down and I am told to see a psychiatrist for drugs which increase my risk of dementia!
Lower back pain if I sit for too long and stiffness in the morning poss osteoporosis .... Pains in arms and shoulders if I have to reach up for something..... Not sure if that's PMR old age or being unfit! Not sure that cold damp weather helps! Got GCA cutting down steroids. Same thing a very active day has to be followed by a take it easy day......
I do not suffer from severe fatigue or pain at the moment, but I have experienced "bouts" of severe fatigue over the years since my diagnosis in 2001, mainly in the first two years of diagnosis.
John
