Sorry for the delay in reply, family here for holidays.
We have to buy most of our own kit. We are Brits abroad ( Portugal ) Have managed to trade up to a 2nd hand stand up wheelchair, motorized bed, sit to stand hoist. Need a lot of help to sit up roll over in bed, which is so frustrating
I have accepted the downward slide of arms and legs Luckily my swallow is stable at 8%
What concerns me is the bits not covered by IBM . Pool exercises three times a week are surely not enough to keep the rest of the body functioning for long?
When I first was starting my journey with Myositis I felt weakness in my legs my sit to stand was bad that was the first thing that was bad then as time went by my arms started going weaker with time. I have had Myositis for many years I want to tell you that you can live with this stuff for a long time I was told I would most likely die after a few years but it's been over twenty years now and I have bad days and good days. I have developed overlapping disease's the body can change a lot over the years, now what I am trying to say is that we are all different in so many ways that we just have to learn to take one day at a time. The weakness comes in a lot of different ways the limbs are the first to weaken but using them is the one way to help our self never give in only when the flares come rest then start over again. Find a good doctor and go at your pace if he is good he can help you through all this if not move on to another one. God bless you and stay strong that can make a real difference Hugs !
I'm learning allot and can say there is no text book and this. I believe most Doctors are being educated just like we are. I haven't found the disease to be the same from person to person, but can compare somewhat. Did that make any sense?
My legs, then my arm muscles, then aches, joint pain. Some days I feel exhausted just trying to get up other days feel great. Even trying to send a email some days my fingers ache. I get upset and stressful. moody one day not the next.
My question once you have the biopsy done and you know you have IBM any help on equipment. Like mobility chair, van with lift or? Is there any help money wise. My wife and I are not rich by any means. I can't work. Funds are limited plus meds cost. Has anyone have experience on funding help.
Talk to your Dr for he or she can help lead you to get some help he can sign for a wheel chair or what ever you may need medicare helps with part of it all and there are help groups but you have to ask for it. I am reading a good book called The Marvelous Transformation is for Myositis and Autoimmune Disease's I find it is helpful for it gives you some insight of her journey and helpful hints as it goes along the author is Emily A Filmore and I am enjoying it you might want to take a look I bought mine on Amazon for 11.00 or something like that it has parts you can just take time and think about where you are in your journey and how to deal with it. It's just a thought for this is a big deal we are going through and listening to some one else's journey is interesting and up lifting also. I am only trying to help us along the way to see things for what they are and support each of us along the way, stay strong and I will try to be here for you if you have any questions Gentle Hugs
Our stories are all a close match in so many respects . Would like to comment on a few. Agree docters are learning from our journey ,ones that have the time or can be bothered.
Cant help with equipment cost as I dont know your system but am in the same situation as Mike . As Brits abroad here in Portugal have found social services of a limited help. We have had a bit of success as at 73 my mind is still ok and have bought on line cheaply, imported from the UK and sold on to upgrade. Some times frustrating sometimes not so successful but keeps the old grey matter working .I spend a lot of time in bed to rest my legs that swell badly as a result of an earlier five way heart by-pass, also gives my wife some space.Gives me lots of time to kill.
Blackie I am also 73 but not with a Heart Surgery (yet) LOL!! I am sorry you are having such a hard time in Portugal here is the U.S. we don't have it good but not bad sorry to hear about your Heart Surgery and the swelling are you icing them a lot that seems to help me and there are pads that you can get that wrap around your ankles also. I bought some of my medical equipment at garage sales and online also, but here our Social Security helps a lot don't know what you have there. How long have you had Myositis if you don't mine sharing with us ? I have had mine many years and use a electric wheelchair at least half the time. Please keep up your spirit and stay safe not to fall. Have a great day Bethann
No problems with the old ticker now. Had the plumbing done 9 years ago. Thought the leg weakness and falling was heart related. Had only just moved from UK to Portugal. Very small population so despite best efforts after nearly 2 years and second opinion and refined diagnosis of IBM in UK wonderful care in Portugal. At least I am unique here and studied at a university hospital Best bit of luck was a dose of query fever eventualy treated with the dreded steroids but it did stop and even reverse the loss of swollow which has so far been maintained for 2yrs ( so no bag }
I have no walking facilities in my legs so I also use an electric wheelchair, an all singing all dancing Balder finness ,see earlier post.
The few things that gets me down are lack of travel, but great memories of so many countries and people.
Not able to cook,hands and arms too weak
Cant do bonsai, again hand and arms too weak Depends on the mood as to weather I am lifted or depressed looking at trees I have created in the past. Mostly I still have fun and laugh a lot. We are in a wonderful place in a wonderful country etc etc etc not in Syria etc etc
Thanks for your mail and keep well and UP yourself
Blackie
Bethann said:
Blackie I am also 73 but not with a Heart Surgery (yet) LOL!! I am sorry you are having such a hard time in Portugal here is the U.S. we don't have it good but not bad sorry to hear about your Heart Surgery and the swelling are you icing them a lot that seems to help me and there are pads that you can get that wrap around your ankles also. I bought some of my medical equipment at garage sales and online also, but here our Social Security helps a lot don't know what you have there. How long have you had Myositis if you don't mine sharing with us ? I have had mine many years and use a electric wheelchair at least half the time. Please keep up your spirit and stay safe not to fall. Have a great day Bethann
As my diagnosis is recent I do not have enough experience to provide input to your question. What I do find though is that when I get stressed (and this seems to be a lot more often these days) my heart beats more rapidly and my muscles weaken. I then have to stop everything and deep breathe. My weakness is mainly on the right hand side and 'yes' I do feel more weak when tired. My Doctors have told me that this disease outs itself individually for each person - not easy I know!
I just saw your blog from a month ago. I’ve been busy 24 hour a day taking care of a husband who has IBM. Just got a little time for myself and I thought I 'd check in.
My husband began experiencing falls over the past 3 years, leading up to complete muscle loss of 95% of his body in March 2015. We 'd be out and his legs would just give out. No reasons, no medical explanations and much physical therapy.
Fatigue,muscle weakness in some cases itchiness,difficulty in swollowing, and sometime rashes occur .I know we are all still learning more and more regarding this awful disease.
I was diagnosed 10 years ago and have largely avoided falls through taking precautions. Use of walking frame, stair lift, bed grab rail, and shower grab rails. Seems the disease just progresses and becomes more intrusive as one weakens. My view is that one can only minimise the risks through planning and obtaining suitable aids. As with you, my wife has had to take the brunt of the work load but will need assistance soon due to the mobility issues.
Swallowing is also a problem but I find taking small sips of carbonated water after every swallow seems to avoid any choking or unpleasant regurgitation.
All a bit horrendous but thats life, keep spirits up and good luck,,
A full body MRI is what you need… This will clearly show the inflammation in the muscles. Have they tested you for lupus? It’s also a good idea to get your vitamin d, iron and calcium levels checked in your blood. My iron was very low when I was first diagnosed which explained my constant tiredness. Hope you get some answers soon and then into some medication that will help.
Mine muscle weakness/soreness started about two months after the first signs (red nail cuticle folds, red scalp, gottron's papules on fingers, rash on knees, elbows, hips). I think the prognosis varies with what type of myositis one has. IBM seems to be difficult to treat, but I have read that dermatomyositis can be reversed. I've seen various studies that show early treatment often resulting in patients who get back to previous strength levels, and my UCLA doctor concurs.
Mine muscle weakness/soreness started about two months after the first signs (red nail cuticle folds, red scalp, gottron's papules on fingers, rash on knees, elbows, hips). I think the prognosis varies with what type of myositis one has. IBM seems to be difficult to treat, but I have read that dermatomyositis can be reversed. I've seen various studies that show early treatment often resulting in patients who get back to previous strength levels, and my UCLA doctor concurs.
Thank you for sharing. My myositis started without notice until I fell down my front stairs on March 13, 2015 and broke a bone in my shoulder. A month later on April 24, 2015, I was coming from PT when an employee of the Ride dropped me and I was rushed in ambulance in the hospital with three broken bone. All the while, my husband was dying of mesothelioma. My daughter took me to see 7 doctors in one day to get to the bottom of my falls and choking on food......I lost 30 pounds. I was plugging along on a gluten free diet until a week ago last Monday when I made stuffing which was not gluten free and which I ate. Two days later, my left ankle swelled and was painful.....went to the doctor covering for my doctor who went home to India for three weeks. The doctor said to take 800mg IBuprofen twice a day, get a walkable ankle brace, ice and elastic sock. I am back on a gluten free diet which I was on until 10 days ago.......now I definitely know that gluten effects my body. I was diagnosed with Inflamed Myositis and Lupus. All the tests came back IBM but my doctor said I would not have responded so well to prednisone if that is what I had. 1 in 100,000 get Myositis. The medications are another story for another time. Thank you for being here and God Bless Us All.
I have severe muscle weakness but have no diagnosis. Just did a CK test and am waiting for the result. I have some questions: what are the ranges of CK results for people with myositis? Could some of you answer so I know if my result might be this? Also, I have muscle pain all over my body (legs and trunk). Do any of you have this? If so, what do you do for muscle pain?
How were you diagnosed with inflamed Myositis and Lupus? What tests were done? (you said all the tests came back IBM). And why did they give you prednisone? What was that supposed to treat? You said "the medications are another story." Please share.
Munya said:
gaiusgracchus said:
Mine muscle weakness/soreness started about two months after the first signs (red nail cuticle folds, red scalp, gottron's papules on fingers, rash on knees, elbows, hips). I think the prognosis varies with what type of myositis one has. IBM seems to be difficult to treat, but I have read that dermatomyositis can be reversed. I've seen various studies that show early treatment often resulting in patients who get back to previous strength levels, and my UCLA doctor concurs.
Thank you for sharing. My myositis started without notice until I fell down my front stairs on March 13, 2015 and broke a bone in my shoulder. A month later on April 24, 2015, I was coming from PT when an employee of the Ride dropped me and I was rushed in ambulance in the hospital with three broken bone. All the while, my husband was dying of mesothelioma. My daughter took me to see 7 doctors in one day to get to the bottom of my falls and choking on food......I lost 30 pounds. I was plugging along on a gluten free diet until a week ago last Monday when I made stuffing which was not gluten free and which I ate. Two days later, my left ankle swelled and was painful.....went to the doctor covering for my doctor who went home to India for three weeks. The doctor said to take 800mg IBuprofen twice a day, get a walkable ankle brace, ice and elastic sock. I am back on a gluten free diet which I was on until 10 days ago.......now I definitely know that gluten effects my body. I was diagnosed with Inflamed Myositis and Lupus. All the tests came back IBM but my doctor said I would not have responded so well to prednisone if that is what I had. 1 in 100,000 get Myositis. The medications are another story for another time. Thank you for being here and God Bless Us All.
Fatigue definitely makes it worse, at least for me. I think my weakness comes and goes. I can tell with a pair of shoes I have, when weakness is bad my shoes have a rubber sole and I constantly stumble, when my legs are stronger, no stumbling, it’s kinda weird. My arm weakness seems to be ongoing, and has,progressively gotten worse. My meds don’t seem to be helping much either. The cocktails I’ve been on
Nothing seems to work. My cpk is running consistently 300-600, which compared to some isn’t high, but when it never comes down then my understanding is that the damage continues.