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Polymyositis
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Walking distances with Myositis
Hi everyone, as yet I am undiagnosed but have classic symptoms of IBM or
Polymyositis
. I am 63 & this happened to me overnight late June this year. For many years though I have had episodic extreme tiredness, headache & nausea particularly after physical exertion.
Hi everyone, as yet I am undiagnosed but have classic symptoms of IBM or
Polymyositis
. I am 63 & this happened to me overnight late June this year. For many years though I have had episodic extreme tiredness, headache & nausea particularly after physical exertion.
Breester
in
Myositis UK
5 years ago
A second opinion and Wales again
Hello lovelies, I've been absent from the group for a while, owing to stuff. At my last rheumy review, I was advised that although my condition is deteriorating, so that I'm now housebound, there was no evidence of autoimmune flaring and so no need to change treatment - "see you in 6 months". I decided
Hello lovelies, I've been absent from the group for a while, owing to stuff. At my last rheumy review, I was advised that although my condition is deteriorating, so that I'm now housebound, there was no evidence of autoimmune flaring and so no need to change treatment - "see you in 6 months". I decided
whisperit
in
LUPUS UK
5 years ago
Inclusion Body Myositis
I was diagnosed with Inclusion Body Myositis in 2013. The effects have gradually worsened and I now have difficulty in walking properly and with balance associated with walking, standing up etc. I do a daily routine of exercises (40 minutes) not only for my legs but also for arms and body to try and
I was diagnosed with Inclusion Body Myositis in 2013. The effects have gradually worsened and I now have difficulty in walking properly and with balance associated with walking, standing up etc. I do a daily routine of exercises (40 minutes) not only for my legs but also for arms and body to try and
Harley463
in
Myositis UK
5 years ago
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Polymyositis fighter 💪🏿
Hi Guys, my name is Ronald,am 34 was diagnosed with
polymyositis
2yrs ago and have been on and off prednisone and methotrexate medication. With lots of continuous Physcio therapy. I’m glad to be part of this Group. I will be happy to answer any questions and share my experiences
Hi Guys, my name is Ronald,am 34 was diagnosed with
polymyositis
2yrs ago and have been on and off prednisone and methotrexate medication. With lots of continuous Physcio therapy. I’m glad to be part of this Group. I will be happy to answer any questions and share my experiences
TAKURA
in
Myositis UK
5 years ago
Just been diagnosed
Hi I got diagnosed with myosotis and
polymyositis
2 days ago. I’ve had symptoms for 2 years Iam scared I don’t know what’s a head for me. Started 50mg of steroids today. I have heavy legs and the lining of my lungs are inflamed. Can anyone give me hope.
Hi I got diagnosed with myosotis and
polymyositis
2 days ago. I’ve had symptoms for 2 years Iam scared I don’t know what’s a head for me. Started 50mg of steroids today. I have heavy legs and the lining of my lungs are inflamed. Can anyone give me hope.
Suntrap12
in
Myositis UK
5 years ago
IVIG Anyone?
My sister just died a few months ago, she had scleroderma/
polymyositis
. The disease got her bowels, and she died of septic shock, very painful and over 2 days with multiple organ failure. I am scared!
My sister just died a few months ago, she had scleroderma/
polymyositis
. The disease got her bowels, and she died of septic shock, very painful and over 2 days with multiple organ failure. I am scared!
ClareR12345
in
Myositis UK
5 years ago
Natural Fatigue Remedies
Hi all, I have MCAS and an autoinflammatory disease. I am on quite a few meds and I have to use stimulants (think Ritalin) to get through the day. Sigh. As I am also trying to get off prednisone its getting even worse now. Does anyone have any recommendations?
Hi all, I have MCAS and an autoinflammatory disease. I am on quite a few meds and I have to use stimulants (think Ritalin) to get through the day. Sigh. As I am also trying to get off prednisone its getting even worse now. Does anyone have any recommendations?
Stm252
in
Foggy's "Invisible Illness" Support
5 years ago
GRAVES AND THYROTOXICOSIS : MUSCLES
This wasting may go so far as to bear a close resemblance to progressive muscular atrophy; occasionally the myopathy may shade into the picture of a
polymyositis
.
This wasting may go so far as to bear a close resemblance to progressive muscular atrophy; occasionally the myopathy may shade into the picture of a
polymyositis
.
ling
in
Thyroid UK
5 years ago
Weakly positive
Can some one explain what a weakly positive means I have a weakly positive for Scleroderma/ Myositis although my muscle biopsy came back normal I have Raynauds secondary, reflux short of breath have trouble swallowing some foods,I hurt all over I have just got rid of a toe ulcer,I am waiting to have
Can some one explain what a weakly positive means I have a weakly positive for Scleroderma/ Myositis although my muscle biopsy came back normal I have Raynauds secondary, reflux short of breath have trouble swallowing some foods,I hurt all over I have just got rid of a toe ulcer,I am waiting to have
160376
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Fatigue in Systemic Lupus Erythematosus and Other Autoimmune Skin Diseases
[Coexistence of hypothyroidism with
polymyositis
or dermatomyositis]. Ann Acad Med Stetin 2006; 52 ( Suppl. 2):49–55. (in Polish). Engberg, I, Segerstedt, J, Waller, G et al.
[Coexistence of hypothyroidism with
polymyositis
or dermatomyositis]. Ann Acad Med Stetin 2006; 52 ( Suppl. 2):49–55. (in Polish). Engberg, I, Segerstedt, J, Waller, G et al.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
5 years ago
Blood tests
I would like guidance on what blood tests would indicate the presence of
Polymyositis
. Although I am not diagnosed I have similar symptoms and due to have bloods soon including CRP. Would CRP show an indicator for this illness. Thank you.
I would like guidance on what blood tests would indicate the presence of
Polymyositis
. Although I am not diagnosed I have similar symptoms and due to have bloods soon including CRP. Would CRP show an indicator for this illness. Thank you.
Nionyn
in
Myositis UK
6 years ago
3rd Global Conference on Myositis Berlin, 27-30th March 2019
Myositis UK has always recognised the importance to support the next generation of Myositis researchers, so is pleased to fund 3 grants of 15,000 Euro (45,000 Euro) for Juvenile Dermatomyositis, Inclusion Body Myositis &
Polymyositis
/Dermatomyositis, that will be awarded at #GCOM2019 We would like
Myositis UK has always recognised the importance to support the next generation of Myositis researchers, so is pleased to fund 3 grants of 15,000 Euro (45,000 Euro) for Juvenile Dermatomyositis, Inclusion Body Myositis &
Polymyositis
/Dermatomyositis, that will be awarded at #GCOM2019 We would like
Jo-Goode
Administrator
in
Myositis UK
5 years ago
Crest raynauds and all the symptoms of polymyositis
Hi I'm a 57 year old male with CREST Raynauds overlapping other interconnective tissue disease's I have recently having a lot of problems with stairs . getting up from seating and laying down to sleep .My wife as been looking on line and come's up with I have all the symptom's of
polymyositis
.
Hi I'm a 57 year old male with CREST Raynauds overlapping other interconnective tissue disease's I have recently having a lot of problems with stairs . getting up from seating and laying down to sleep .My wife as been looking on line and come's up with I have all the symptom's of
polymyositis
.
Psg83
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Hi I'm a 57 year old male with CREST Raynauds overlapping other interconnective tissue disease's I have recently having a lot of problems
Hi I'm a 57 year old male with CREST Raynauds overlapping other interconnective tissue disease's I have recently having a lot of problems with stairs . getting up from seating and laying down to sleep .My wife as been looking on line and come's up with I have all the symptom's of
polymyositis
.
Hi I'm a 57 year old male with CREST Raynauds overlapping other interconnective tissue disease's I have recently having a lot of problems with stairs . getting up from seating and laying down to sleep .My wife as been looking on line and come's up with I have all the symptom's of
polymyositis
.
Psg83
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Pain meds Polymyositis people take for everyday aches and pains
Hi, I would like to know what myositis suffers take to help deal with the pains and aches. I was taking paracetamol everyday. It didn't do any good so I stopped. I then started taking Ibuprofen which does help but I found out recently that you can not take it for a long time. I only take occasionally
Hi, I would like to know what myositis suffers take to help deal with the pains and aches. I was taking paracetamol everyday. It didn't do any good so I stopped. I then started taking Ibuprofen which does help but I found out recently that you can not take it for a long time. I only take occasionally
Aber1980
in
Myositis UK
5 years ago
Can I just be 25?
Ive been diagnosed with MTCD+
polymyositis
+dermatomyositis since I was 20 years old and many flare ups and hair loss later, I’m 25 now. I’ve been on prednisone, hydroxychloriquine and azathioprine for my joint and muscle pains and to keep my immune suppressed.
Ive been diagnosed with MTCD+
polymyositis
+dermatomyositis since I was 20 years old and many flare ups and hair loss later, I’m 25 now. I’ve been on prednisone, hydroxychloriquine and azathioprine for my joint and muscle pains and to keep my immune suppressed.
Mishycake
in
LUPUS UK
5 years ago
Myositis and Sarcoidosis
After suffering excruciating pain in my left thigh I was diagnosed with sciatica. After 3 weeks of getting no where I went to see a private doctor. After lots of blood tests, an MRI my specialist requested I have a muscle biopsy. This confirmed I had Myositis in my left thigh. Upon further investigation
After suffering excruciating pain in my left thigh I was diagnosed with sciatica. After 3 weeks of getting no where I went to see a private doctor. After lots of blood tests, an MRI my specialist requested I have a muscle biopsy. This confirmed I had Myositis in my left thigh. Upon further investigation
JP44
in
Myositis UK
6 years ago
Muscle atrophy - 4 years and no diagnosis
She had a positive result for myositis, but when they’ve done a second test to find out which type it is, it came back negative(it wasn’t
polymyositis
or dermatomyositis...very confusing).
She had a positive result for myositis, but when they’ve done a second test to find out which type it is, it came back negative(it wasn’t
polymyositis
or dermatomyositis...very confusing).
Whitey11
in
Thyroid UK
6 years ago
Polymyositis and azathioprine
Hi I was diagnosed with Jo-1 Syndrome and
Polymyositis
in June 2018. I have been tapering Prednisone and I am down to 10mg a day. I have had Azathioprine added recently up to 125mgs per day now but it is not agreeing with me, vomiting and diarrhoea on and off.
Hi I was diagnosed with Jo-1 Syndrome and
Polymyositis
in June 2018. I have been tapering Prednisone and I am down to 10mg a day. I have had Azathioprine added recently up to 125mgs per day now but it is not agreeing with me, vomiting and diarrhoea on and off.
Fleetwood49
in
Myositis UK
6 years ago
Good news
Optician says my eyes are healthy. ...phew. since B12 deficiency my brain just doesn't /can't do the extra work. I used to always have to wear 3 steps below my actual prescription as couldn't tolerate it. So now I need 2 steps up. My brain actually relaxed So you right foggy me not to wait. So will
Optician says my eyes are healthy. ...phew. since B12 deficiency my brain just doesn't /can't do the extra work. I used to always have to wear 3 steps below my actual prescription as couldn't tolerate it. So now I need 2 steps up. My brain actually relaxed So you right foggy me not to wait. So will
Nackapan
in
Pernicious Anaemia Society
6 years ago
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