I would love to hear others response to your question regarding a mattress. I definitely need to get a mattress. My current mattress is much too soft. Its so difficult to roll over on my current mattress. Once I lay down and get into position, it better be a good one. For the most part, I am stuck until morning unless I wake up my boyfriend all night to roll me over.

I had a Tempur-Pedic mattress pad that gave wonderful support; however, I removed it when I started sweating at night from prednisone. The dense foam has no ventilation, and it was just too hot against my body. Now I'm just using a regular firm-support mattress, and I don't sweat nearly as much, but I miss the comfortable back support from the tempur-pedic. I still use my memory foam pillows because they're so good for neck and shoulder muscle pain, but I even toss them off the bed sometimes since they cause my head to sweat.

If I were shopping for a new mattress, I'd skip the Tempur-Pedic store and go to the Sleep Number store. I tested one a couple years ago, and it felt like a dream. But then, I'm a scientific kind of person, and anything that lets you experiment with numbers is likely to get me excited :) I'd also ask about a money back guarantee in case you don't like it - I have no idea if mattresses are guaranteed, but it would be a very good thing.

Good luck, and let us know if you come up with anything cool and comfortable.
~Lucky

I have always preferred a harder mattress than most and my main concern now is one that will provide me the support that I need when I try to get up. I am always in so much pain and can't just stand up. I have to support myself on the mattress or something. I thought about the Tempur pedic but don't quite understand how the foam holds up over time. I didn't want the expense of the Sleep Number bed. I am considering a Simmons or Serta regular mattress, but one of their higher end models. I guess that I will be laying on mattresses for a day.

I too am in the swollen ankle club. I think it is the disease for me, not the medications because I have seen swelling go down some since I've been on methotrexate and prednisone. It continues to go up and down as the day goes on, more activity means more swelling. I do not care for it one bit! I do all kinds of things to manage it, put my legs up the wall, yoga, qigong, epsom salt bath, arnica gel, ice, brushing, lymphatic drainage. (not all at one time :) I feel it is a sign of my overactive immune system, waste and fluids build up in response to activity. I look forward to the day when it no longer happens. I have always thought I was just chubby but now I think it was a lot of swelling. I can gain 5lbs of fluid in one day. I told a doctor this back in November when I got my respiratory virus that triggered this flare and she totally dismissed me and said if I did a doppler it would be normal. She is no longer my doctor. Brenda that made me laugh that you call them your Barney Rubble feet, I call mine my Fred Flintstone feet.

I went to my new primary today who gave me a diuretic for the swelling. She also up my Neurotin for my nerves to 300 mg instead of the 100 mg three times a day and she gave me Folic Acid that se said my help with the metal taste in my mouth. She kept me off the Cellcept until I have a CBC done. She wants to check my red blood count first.

I felt very comfortable with her and I am happy that I made a change. She took a very complete history. It feels good to have a doctor who takes the time to sit and ask questions that I would never have thought about.

Brenda, I'm so glad your new doctor worked out for you. I hope you get some relief from the changes.
Maruska

Thank you

Yes! sounds like you have a doctor you can be comfortable with and trust. That is so important! Congratulations on your find (and the diuretic, too bet you feel and a bit better ;-)

The diuretic is working and the Metamucil and Senna are also. I was a little leery about the Metamucil, which takes awful and the Senna because of my inability to move fast and if it hit me hard. But is was gentle and worked.

What tends to amaze me is that I worked in healthcare for a long time and my main position was to assist others through the maze of getting medical assistance and help to pay for that assistance and I was very good at it. Then I get ill, not only with the poly, but with my diabetes and I have hit brick walls whenever I need a little help. I never qualified for anything, when when I lost my job. I would explain that I was diabetic and had no insurance and for a while no income and it didn't matter. There was nothing there for me. I do believe that it may have a lot to do with living in FL. Now I have been blessed with a team of really great physicians and that I believe is due to going to Tampa General Hospital which is a teaching hospital for USF and I was in some depts such as Rheumatology a test subject. Fine with me. I got great care and saw my rheumy yesterday in the hallway, who called my name and waved at me before I saw him. He is a fellow at USF and was so happy to see me attempting to walk with my walker. I am blessed. And I share my blessings with you all.

I'm happy to hear your good news, Brenda! And good for you for volunteering to be a test subject! I've done the same thing to get the medical treatment I needed. My insurance company (Blue Cross and Blue Shield) is a real tight-wad about covering any treatment that isn't FDA approved for DM because they say it's "experimental." When I desperately needed to try Rituxan a few years ago, I joined the experiment as a subject and got a $35,000 treatment for free!

One major problem that affects all of us is the fact that myositis research is not done to the same extent as research for such things as breast cancer or heart disease. There are a several reasons for this, but one of the biggest obstacles is finding subjects for treatment research. The FDA has very strict standards for the research that's necessary to approve treatments, and running a study with a large enough number of participants is one requirement. Since our disease is relatively rare, it can take several years to recruit enough subjects, and progress in understanding and treating DM, PM, and IBM is really slow compared to other diseases.

So, I strongly encourage everyone to consider participating in any type of myositis research if you ever have the opportunity. If anyone wants more specific information, just let me know and I'll be happy to help.
~Lucky

I had been going to various doctors over the past two years telling them of the problems with my legs and spending money on top of money for office copays and deductibles and being told that they couldn't find anything. Since it is the muscle I had no idea that the problem that I was experiencing with constipation, which I had never had may also be due to inability for my muscle in that area working properly, so I joined a test study that used a few placebos and then finally gave me something that worked, but it was really only a laxative that I prefer not to use on a regular basis. The best outcome was that I was given a free colonoscopy plus a small stipend that helped. I am for studies and will try them again. I am trying to get my daughter into an asthma study.