It's Sunday morning and this weekend I have already fallen once, and slipped once. My body is in raging pain. I can not stand to wear any shoes but flip flops. Yesterday my boyfriend said he was taking my flip flops and throwing them away. I can't even stand socks. Regular shoes feel very heavy to me. I did get a new pair of trainers that are very light weight. I guess today I will start breaking them in. Blah.
I saw my rhum on Friday. She is always in a hurry and very rude. I have lost a lot of use in my right arm. Have the tingling and pain and muscle loss. The tip of middle finger is totally numb. I have been on Gabapentin for several years, and it just does not seem to work anymore. She did not even want to hear about it. She told me it was old age. Um I'm only 49. Is that old age??? Many times I have asked her to change me from Simponi to something else she says she cant do that that the dermatologist has too. My dermatologist says its her job to change it. This has gone on for at least 5 years. So I am done. I have switched my medical plan and will be seeing a new Doc at the end of Sept. It is as if my docs really don't want to listen or fix anything anymore. I never know what issue is causing the pain because there are so many. I have done a lot of research online about Psoriasis, and it leads to so many other things. I could not even write it all on one page. It's very frustrating, but pretty much all my other problems lead right back to Psoriasis.
I have a beautiful daughter in the Army who also has Psoriasis. I pray they come up with a cure so she does not have to go threw what I have. I have been lucky neither of my sons have it.
I’m so sorry, MiP, that you’re going through this miserable period. When I read your account of the interaction with your rheumatologist, I thought “I do believe I’d be switching doctors.” Glad to hear that you are working on getting a new one. Finding doctors with whom you can work and in whom you have confidence makes all the difference!
Feet. I know. You don’t even have to tell me. I hope your new doc has some good ideas for helping you feel your best. In the meanwhile, vent here: we get it.
WHAT?!!! Old age at 49? No offense, but that doctor is a quack--a smart doctor would never say that!
Idk what gabapentin is, but maybe Nortriptyline would work for your feet. It helped my miserable painful feet that felt like I was walking on a bed of burning spikes and all the little bones near my toes were breaking. Most of that went away from Nortriptyline, and now the Enbrel has helped even more. Also, we'd buy me the most cushy slippers we could find, which would help at home somewhat. Ice, ice, ice those feet if there's neuropathy! It worked great for me before the Nortriptyline.
Don't give up. Your doctors obviously aren't being very professional. They should refer you to specialists if they are stumped!
Good luck to you and your daughter! Sorry you are having such a difficult time. :-(
I never realized that neuropathy went along with this disorder as I never found it listed on "symptoms list". I presented first with neuropathy in my feet and the Gabapentin took the edge off. I still take it but I'm not sure it's really working anymore.
Same here. Every time I looked up neuropathy on the web, I'd find it listed as "diabetic neuropathy", which was confusing because I don't have diabetes. But, I did notice that the neuropathy would come on stronger and earlier in the day if I ate a lot of sweets. Maybe this was just a coincidence, or maybe I just surmised this, trying to figure out a reason for the neuropathy.
I had neuropathy too, and before I was diagnosed, it really confused my doc. After my diagnosis, I had nerve conduction testing done and the neurologist said that it was caused by the swelling of the PsA putting pressure on the nerves in my feet. Makes sense. So, although the neuropathy was as a result of my PsA, it wasn’t directly caused by it. I guess that’s why you don’t see it listed as a symptom.
Thank you everyone for your thoughts and suggestions. Most of my neuropathy pain is in my right arm, and worse in my hand and fingers. Neuropathy in my left hand but not as bad as my right. I do not think I have neuropathy in my feet I just cant stand closed in shoes or socks. Toe nails are bad maybe that is part of the reason. Shoes make my feet feel heavy, which causes pain in my legs. I am also diabetic. Diagnosis reads "prednisone induced diabetic." This hit me really hard. Had been on really high doses of prednisone for a long time. If your on prednisone daily please please watch for the symptoms of diabetes. This was a total shock to me and honestly all most destroyed me. Now they tell me I will never be able to go off prednisone. Has anyone else been told that? Luckly I only take 1mg a day now. My doc also told me that prednisone has caused my adrenal glad to stop working. Great another thing to figure out. It never stops with the diagnosis.
Hi, MiP. I forgot to say that my neuropathy was in my feet, as well as in my arms and hands. They thought my hands were carpal tunnel, but I had a release and the neuropathy only really got better when I started on Enbrel. The neuropathy in my feet is pretty much gone now.
What a terrible thing to have as a result of prednisone. Fortunately, 1 mg is a super low dose, so it’s a good thing that you can get by with that little.
You’re right about its never stopping with the diagnosis: PsA is a never-ending project, as we all know!
Take good care, MiP!