I am new to this myositis world. I am in the process of being diagnosed and have been looking on the web for some success stories. I know that some people have the disease go into remission and regain their strength. I need to see those stories right now....I have a job where I am in outside sales and need to be fairly active. Can anyone share?:)
Hi Rose,
Welcome! I can remember being where you are now, and desperately wanting the good news. When you first start learning about these diseases, it seems like only the worst possible information gets to you first and it's freaking scary. Immediately after telling me that the bumps on my fingers looked like Dermatomyositis, my Dermatologist said, "Now don't go home and look it up online!" Haaha!
I just spoke with my Rheumatologist last week about gaining muscle tissue back. She said that as long as the tissue hasn't been too damaged, that it should be able to rebuild. Even if some tissue has been damaged beyond repair, sometimes the surrounding and surviving tissue can rebuild and provide strength in the area. Then, sometimes it's just damaged beyond repair and that is what we all hope to avoid!
While I am not in remission on my own, I am in a medically-assisted remission, where my medication keeps the inflammation down and keeps me relatively healthy. I struggle a little still, but I'm alive and doing pretty great!
With myositis, we often struggle with "unexplained" weakness even when the counts seem stable. I was on full time disability, but now have a part-time job that I do from home, which works great for me. With rest and planning (carefully conserving and distributing my energy and strength [it takes practice - but you can do it]) I am able to get out and see friends and family as well as do quite a few things out and about.
I am working to build back my strength and have learned that I seem to be able to be active in short (about 15 minute) intervals with resting in between. Sometimes I get a little more, sometimes less, but I have been learning to work with it.
I hope that this info is a little comforting. There are others who do bounce back and get back to where their lives left off before getting sick and I sure hope that someday I can say that I'm one of them!
Once you get your biopsy back - let me know and I will give you a few Facebook groups that are really great!
Also, one of the best things that I did when I first got sick was get a counselor. My husband, friends and family were great, but I needed someone to vent to, to tell how scared I was, and get all that off my chest. I still talked with my husband about everything - but I realized that he was scared too, so I didn't want to force him to take in everything from me while dealing with his own feelings. Having my own person to just unload on was worth the price! Haaha!! I still go in every few weeks just to make sure that I'm staying positive and keeping the focus forward.
Anyway - let me know if there is anything that I can help with.
Best, Maren
Thanks Maren… I appreciate it:)
Rose,
I’m working on getting stronger while still on meds. For me I’m having a hard time with strength but I’ve heard from people in other support groups who went on to do 5k’s and others who work full time. Some in full remission with Medicine, some without meds. Others are still in bad shape trying to work full time and I wish none of us had to do that.
Just have to take it a day at a time. Thinking of you and hoping the best!!
Hi Rose,
I'm 2 years in post diagnosis and I've been working full-time for the last year. I built up to working full time again over about 6 months, it's important you do that as you're stamina takes a beating with this disease. In fact it's your stamina rather than your strength that can be the difficult one to get back. My strength is probably at about 70% but I still get tired a lot and easily. I'm lucky as my job is desk based but it does demand a lot of concentration and I spend a lot of time on calls and doing things like pre-sales demo's (I work in software development on the design and strategy side).
I saw my rheumy yesterday, she said it just takes time to recover as this is a serious condition, but you will recover Rose with treatment. Take it easy in the first stages with exercise - do some, gentle stuff, don't go mad (I did and hurt my leg badly) be patient, thats the best advise I can give and build up to things, you'll get there.
Also I'm convinced a good diet helps (doesn't cure, but helps).
Thanks guys....went back to work today....had a lunch I did not want to cancel...leg still sore from muscle biopsy on Monday ...but it felt good mentally to be back.....plan on taking an office day tomorrow to get some expense reports done and call around to my offices...want to rest my leg a little more.....trying to manage this without taking disability since I was just chosen for the emerging leaders program at work which will give me the training I need to be a manager....bad timing for this disease to raise it's ugly head....plus I am determined that I will not get the best of me....I have been resting at night and on the weekends....I have been having my friends come over to my house instead of going out and saying no to many events to preserve my strength...I will know more next week once the results from all my testing is in and I meet with my rheum to create a game plan.....I have been doing the no wheat/no sugar/ no dairy eating plan for over a month to cut down on inflammation. I also found an integrative doc to look at what vitamins/amino acids/nutrients I am deficient in and creating a customized cocktail for me....I appreciate all your advice and well wishes....nice to find such a cool group:)
Rose, I just received my dx in May, after two years of biopsies, tests and doctors. In November I changed my diet to the no wheat/sugar/dairy and found that the rash on my knees, ankles and elbows went away. Because of that, I'm going to pursue the nutrition avenue, along with the conventional methods of treatment. Fortunately, my DM is Amyopathic so far and I want to keep it that way!
Hey Red.....Why di fit take two years to get a biopsy? That must have been very frustrating...
Rose, it didn't take two years for the biopsy...I've had three biopsies to try to get a dx. It wasn't until the third biopsy was done in May that it showed DM.