HI Chuckles,
I am currently on a disability leave that I started January 2nd. I suffered at work for over a year with this , and one of my primary issues is terrible anxiety along with all the daily pain. At first doctors thought I had lupus and I was diagnosed officially 4 months or so ago. I am fortunate to have a job where I have been there 13 years and I am able to take up to 13 weeks of disability leave with pay. I took full advantage of that to try and get things under control, as I work in a call center which is a high stress atmosphere. I am going into the 8th week of my disability leave and I feel like I am only very slightly better than when I left.
I saw my doctor yesterday and told him I needed this third month. They started me on Savella two months ago, on the lowest dose of 25 mg twice per day. I didn’t notice any improvement, and I was also going to physical therapy twice per week. They raised it to 50 mg twice per day last month, and the only noticeable improvement was less peripheral neuropathy in my feet and I haven’t had any headaches. My anxiety seems as bad with no change and I still have terrible pain, especially in my lower back (I get a break from it every few weeks for about a week, then it starts back up). I still cant do many tasks at all without suffering for the rest of the day with legs, arms, shoulders, upper back, lower back, you get the idea. I feel like I am in a permanent flareup that varies day to day, but never ends and some days it really ramps up and makes me suffer for days and days before calming down again.
A couple weeks ago I stopped physical therapy and joined the YMCA. I took one aqua exercise class and it was the happiest I felt in over a year. Finally I could move without pain, while in the water. I felt some hope. Of course after the class, I suffered for two days, but I believe if I make this something I can commit to at least 3 days a week, maybe I’ll start feeling better. I slept the best I have in over a year after that class.
I went back to my doctor yesterday and expressed that I needed this final month from work to do that. I wanted to ask for medication changes based on what I have researched, but he is convinced that we just need to raise Savella to 100 mg twice per day. He says it is going to improve my anxiety and pain. So, I went with doctors orders and am hoping for the best. I was terrified that today could have been the day I was returning to work, so I understand your fear. I was fortunate to get another 4 weeks extension, and I am sure that when that ends, I will be just as scared. My hope is that since the weather is warming up here in New York that my symptoms will be calming down and it will be okay.
I wont ever feel bad for taking care of myself. I hope this Savella is really going to work like the doctor believes it will. I will go out on leave annually if that’s what it takes because I have 7 years before I can retire. Whatever gets me to the finish line with this disorder, that’s what I am going to do and I really dont care what anyone else may think. I know how I feel, and if people knew this horrible disorder, they wouldn’t be so quick to judge. So, I will dismiss their ignorance and do what I need to for me. You should do the same whenever needed with no apologies. We need those breaks to regroup.
Sincerely,
Starr