It's only been a year since the first signs of the illness has come out and it has gone from bad to worse really fast. I guess I'm lucky they diagnosed it so fast. My feet are in bad shape. The podiatrist says I am having nerve issues along with the arthritis. I spend the whole day hiding the pain from the kids and feel bad unloading on my husband after he worked a 12 hour day. Even though he is understanding I still think he doesn't fully understand what I'm going thru
Hi Dawn. Sorry it's not going very well for you. :-(
I'm wondering what the nerve issue symptoms are. If you have neuropathy on the bottoms of your feet (like you're walking on a bed of hot coals and spikes) I can tell you that before my doctor finally put me on a med for it I used ice packs at bedtime every day. The pain was so bad I know I couldn't handle it again. I was much tougher a few years ago when I had that. After I complained to my doctor about it a few times she finally put me on Nortriptyline 10mg, which I took for several months, and the neuropathy went away. Be sure to work on getting those feet well. After the neuropathy stopped, I had mild to moderate soreness in my feet, but I didn't think it was anything. Well, all of a sudden, March 1, I made lot of trips up and down our basement stairs to store our Xmas stuff. That was the straw that broke the camel's back because my feet started hurting like he** the next day. I now have, as shown on an MRI, advanced arthrosis in a lot of the joints in my feet. I can't walk more than a few minutes at a time. I wear special shoes and orthotics. My life and has changed a lot. But, I'm glad Enbrel is still working pretty well for my PsA symptoms, or I'd be a real basket case.
I hope your feet aren't too bad yet--take good care of them, if there's still a chance they aren't permanently damaged already!
I feel for you, having young kids to raise and trying to put on a happy face for them. I can't imagine how hard that would be! I have a hard enough time watching the grandkids a few times a week.
Omg yes. That’s exactly what it feels like. Walk on hot coals. The podiatrist put me on Lyrica. And is trying to get approval from my insurance a walking Braceto keep my ankle street so it doesn’t hit that nerve and make that heat go in my foot. The left one hurts more than the right one right now. But at night I can hardly walk on either of them and sleeping is miserable. The Lyrica is helping but makes me stupid so I only take it at night. My rheumatologist says the foot pain is just due to the arthritis but the podiatrist disagrees and says it’s nerve issues
We are in the process of adopting a sibling group a brother and sister. We have had them for only six months now. the adoption papers are starting now they should be finalized in March. They are four and five years old right now. And have a multitude of problems. Due to severe neglect and abuse from their biological mother and a foster family that they were put in. So I have to be strong for them but some days it’s hard to put on a happy face.
Thank you for replying to my post. I hope they find some relief and help for you with your pain.
Hi again Dawn, I've only just found this post after reading & replying to your blog.
You say you're not happy with the treatment you're getting for the two conditions. I guess what you do need to establish in your own mind is whether it is the standard approach. Have you also tried the Ben's Friends Lupus site in case there are folk there who have both?
I'm in the UK so I don't personally know exactly how you'd go about finding a better rheumy if you do definitely decide that yours isn't trying hard enough. But if there are others in the States who do, especially if they live relatively close to where you are, I hope they will see this post and give you some pointers.