I have been reading quite a bit on this site and it’s helped me understand most of my symptoms. Thank you to those of you who replied.
Now I have another symptom that I want to see if anyone identifies with in regards to PD.
While it has improved somewhat since medication, I have some horrific experiences with skin sensations. My skin can suddenly feel like I have just rubbed Bengay into it. Sometimes it itches. Profusely. I have actually clawed myself while sleeping and wake up to scratch marks and blood on the sheets. Claritin helps with the itching a little bit. Enough to where I can watch a movie and not sit and scratch disrupting everyone else.
But that weird sensation on my skin is terrible. For about a year, it was so bad that I had to ask my fiancé to please not touch me. That was horrible for him. I hated doing it, but I couldn’t stand anything touching my skin. Not even the sheets. I still experience this. Sometimes when he lays his hand over my forearm to show me he cares, I tolerate it as long as I can, then gently lift his hand and tell him what is happening.
Other times, I feel like my skin is on fire. I feel like my skin is scalded. Especially my face. But many times it’s my entire body. I feel like my blood is boiling. Since I have RA as well, I am not sure if this is the RA or the Parkinson’s or both.
I spoke to my rheumatologist about it and he told me that some patients with uncontrolled RA like myself actually have elevated temps from the inflammation.
I have had uncontrolled RA for approximately 4 years now. I have been on numerous medications and injections to no avail. When I saw my rheumatologist 2 months ago, he told me he wanted me to try a new drug, Rinvoq. Instead of weekly injections it was a daily pill. He felt like the injections were being metabolized too quickly because I would experience relief for about 3-4 days then the symptoms returned with a vengeance. Rinvoq also helps the fatigue. That was the first medication that I read which addressed fatigue. One medication which helped me with fatigue was Wellbutrin. I had prescribed it often for my patients. Especially those with Fibromyalgia and depression. I also prescribed it for smoking cessation because it helps tremendously. I was excited about the Rinvoq addressing the fatigue with RA, but didn’t hold my breath. I was told not to expect any miracles and I probably would not notice any changes in my pain and fatigue for about 3 months.
After a week of taking Rinvoq, I actually got out of bed and walked outside to where my husband was working in the yard. He looked up surprised and said “Welcome back, Judy.” I couldn’t believe I felt like my old self again. It didn’t last, but I do have better days now.
Imagine having fatigue from RA and PD at the same time. I actually wished for death. Sometimes I felt the symptoms were too much to bear and life was not worth living. I could barely swallow. I choked every time I ate or drank anything. I would lie there soaked through the sheets and have to ask for help to change them. I could barely stand while we changed the sheets. I noticed I was short of breath. I could not speak in complete sentences anymore. My words just trailed off and disappeared at the end of my sentences. I began stuttering. I was a public speaker. Really? I have issues with stuttering now?
This was all during the Covid Pandemic. When the shortness of breath started and I couldn’t get my words out to finish my sentences I got worried. So twice I went to the doctor to be tested for Covid and I was negative. I never left the house. How could I contract Covid? I couldn’t get out of bed. Had to have my groceries delivered. I had to give up my medical practice because I could not take care of myself let alone anyone else. Could life get any worse?
Some of the skin issues have improved. However, they are still there. I started Rinvoq just after I started taking Sinemet. So it’s difficult to ascertain just where the problem lies and which drug is helping. I have a gut feeling it’s both.
At the time when my skin felt the worst, I had these horrific sweats. Getting up and trying to get ready for work, I was halfway ready when I would start sweating. It soaked my hair and clothes. My makeup that took 30 minutes to apply just slid off of my face with the sweat. I took a picture because I felt no one would believe me, but I looked like I had just stepped out of the shower. RA does not do that. It was the Parkinson’s, but I didn’t realize it at the time.
I was just wondering if anyone else experienced the itching and weird skin sensations and sweating. Please respond if you have had any of these symptoms.
Your feedback means so much to me. It helps me understand this disease so I can better tolerate it. That in turn helps my emotional status. I know you can identify with that statement!
Hopefully it will help you to help me.