Thank you so much. I have had this condition since 1995 along with Lupus. I changed jobs about 2 years ago and it was a job that I had done and left about 12 years ago, due to the high stress level. But I needed to work and within 19 months my symptoms were beyond my ability to maintain an 8 hour a day job. I was placed on temp disability in October and had great results with the combo or meds that included the plaquenil. In December I really believed I was returning to work, although I knew I would be returning to a highly stressful environment (I am a Career Counselor in San Diego,working with a population with chronic unemployment, thus finding jobs in this economic environment for folks with multiple issues is just so so difficult), but I digress.
I started having eye pressure and in January my neurologist took me off the Plaquenil. Shortly thereafter, like, within 4 days my pain levels were intolerable. I was in bed and literally in tears from pain in feet, skin, muscles and joints. I really wanted to die. Then I was diagnosed with glaucoma. My periferal vision is affected, but now, on top of the pain, which is somewhat under control, I also suffer from confusion, short term memory loss, and my inability to focus on any project, craft, email, etc. The namenda is a off brand typically prescribed for Alzheimer's but my Pain Management doctor stated it would help with the pain.
I see my Pain doctor next week and I will definitely will take all my meds and ask him to make some changes and remove some from my current regimen. My husband has accompanied me to my last several appointments and serves as a coach, asking the "whys" and the "what ifs" that I just don't remember to ask.
I make it a point to start a list and he is patient enough to make sure I check everything off.
On my first appointment he suggested a change in my diet and recommended a couple of books and a video. I read the China Study and watched Forks not Knives and within 3 days I eliminated protein and 95% dairy products. I did this with the idea that at my age of 54, I need to take more responsibility for my health. I lost 20 pounds in the first 5 weeks ( at 125 to 130lbs now), but my symptoms were never relieved. He assured me that I would feel better but it would take about 2 years to fully regenerate my cells. I have continued this style of eating, which has not been difficult as both my adult daughters have been vegeterian for most of their lives. I took it one step further and I am a vegan.
Again, I digress. I sleep about 4 hours at night, and thus I nap through out the day, which then makes it difficult to sleep.
Now I am just rambling.... sorry...:) I will let you know how my appoinment turns out. And thanks for your reply and this was very encouraging. May God continue to bless you. Socorro "CoCo" Alaniz.
Renie said:
CoCoinBonita: My suggestion would be to see a different Rheumatologist just for a second opinion. Some of your medications are for the same thing, like Lyrica and Savella are both given for Fibromyalgia, so it really should be one or the other; not both. Also Neurontin works similarly, and although you are on a low dose, I don't know if there is a conflict with that also.
The addition of Namenda, Tylenol w/codeine, Vimovo and Xanax worries me; especially if you have Plaquenil Toxicity. It's just a lot of very strong medicines to be taking at the same time, and I can understand why you're tired and confused. Just for your own safety; look into a second opinion. That's just MY opinion!Hugs, Renie