I am losing strength/mobility in my hands very quickly. Working with OT, starting Enbrel, Massage therapist today. Doing everything I can but eating, dressing, cooking, even working getting difficult.
Anyone out there with some experience with their symptoms not just stopping but actually improving? Trying to stay positive but is this permanent? I need to know to either buy some mobility aids (shoe horns, forks that wrap around my fingers) or hold out for a few months to see what happens.
Go ahead and buy any mobility aids that will assist you now. When you start to get mobility back (and yes I said when because you always have to be optimistic when you have PsA) you may not need them but for right now you need to make life easier for yourself. It's frustrating enough not to be able to do things so why make it hard for yourself when you can make things a little easier.
A few years ago, when I first started feeling very weak I broke down and bought a cane. It was very handy for the few months I needed it. Without it, I wouldn't have been able to walk down my block. I no longer use it, but I keep it handy for future use, if I need it.
I am very into mobility aids. I don’t need them all the time, but when I do they are a blessing. I have bad days (just like everyone else here!) and am so glad that I invested in my little helpers. I have a wonderful cane, some wrist braces, and instead of buying special utensils or pens, I wrap a little of the self sticking sports wrap around the pens and some pipe insulation for the utensils. Its a cheap temporary fix, and it works so well! I aslo have a shower chair for days that I am feeling especially weak. It makes me feel so much safer in the tub and I’m less likely to miss bathing because I’m afraid I might fall. I was taking sink baths before I got it. the best part about it is that I can do it on my own.
Just because you use these things, does not mean that you are giving into the disease. It doesn’t mean that you are any less hopeful that it will get better. It means that you are doing your best to continue with your life and keep being the independent person you always were, but for now you need a little help!
I have a collection of splints and braces, including finger splints, as I've had a lot of trouble with my hands. They are used as needed, but I'm always glad that they are around for as needed.
I have improved since I went on Enbrel and I am not as stiff and sore when I wake up. The day before I am due for my next shot I get worse again but not as bad as I once was. I am walking better and have regained some use in my hands, not all of it has come back but improvement. So do be encouraged.
I could not get the top milk or pull a ring pull or hold a knife to butter my toast and I would look forward to washing up to get my hands in the hot water.
I have gadgets for all sorts of things and I have a friend who has even made me some so I can cope.
I live alone and I have to manage as I am not ready to go into an old peoples home yet.
I actually find it a challenge to find little ways on how to cope so I can stay independent.
I have a collections of splints and braces(~16 ish) and a grabber stick. Canes, a walker, shoe horn, button hook, jewlery helper, rubber knob covers, a fancy pop can tab opener, a jar opener ( electric and my Husband) and compression gloves. I also have Dyson( blue sticky rubber film) that I can wrap around paint brushes, markers etc to help grip. I was very hesitant at first to have any of these. I was too young,…etc. But, my best friend (who has RA) and mt OT convinced me to try them. I do not need them everyday but it is a huge help that when I do I have them. The button hook has saved me many times when my husband is out of the house and I have to dress my toddler. Man those buttons are small. If you can get them I would recommend it as they will help. Just rembered ESP with canes there are nice looking canes but it also must be functional. Hang in there. I figure I may not beat it but I am going to dance with it!
Some of my mobility and strength did return once I started taking meds. I wasnt able to eat or get dressed without difficulty at first or even make a closed fist with my hands. I found that the improvement was fastest right after starting meds and has now tapered off. My advice would be to go ahead and use some aids when you have bad days or for now. This does not mean you will always need them. Also keep in mind that although you dont want to intentionally cause yourself pain, it is good to use our joints to maintain their use. It is use it or lose it to an extent. Ask you therapist about safely using your joints and when to push yourself or rely on something else.
Two years ago, I was afraid to hold my newborn granddaughter unless I was sitting on a bed with a pillow on my lap, because I had lost a lot of strength in my arms and hands and was afraid that I would drop her. And I was very accustomed to holding babies. Sometimes I had to use a wheelchair. MTX helped me. Enbrel did not. Humira does. I can now do most things I did before my PsA was triggered by an infection. I can use a trowel or shovel to dig in the garden and I can easily walk a mile.
I hope that you find a therapy that works as well for you. In the meantime, as many people have said, use whatever aids you need to get where you want to go and do what you want and need to do. If a person needs to use a wheelchair this week, that doesn't mean they will need to use it next week. When I used gadgets to help me do what I wanted to do, I was glad that they existed, so that I could get the lid off of a jar or visit a museum.
You might ask your Rheumy to refer you to a compounding Pharmacist for your hands..... I did everything mentioned above, but the one thing that made a huge difference was a cream my pharmacist made for me. To the cream she added 5% dicloflonec, 5% DMSO (horse lineament), 5% lidocaine. She has also made versions that include menthol (tiger balm) and or capiscan. But getting the NSAID to the joints (the DMSO gets it right there) and the Lidocaine for the pain allowed this carving (and its been a while):
The first long term sickness I had from work (2011) was due mainly to the pain and weakness in my hands......I was off for 4 months but, with following the exercises, wearing the splints from my OT, the medication starting to work and time and rest I started back at work (renal nursing, which is very hard on the hands, cannulating patients, lining and priming dialysis machines and troubleshooting machine problems especially) on short shifts and managed.
It took time and thinking around problems to save my hands extra stress but I can manage most things at home and work........when I had been unable to even pull up my knickers, get dressed, cook etc.
Just hand in there and work with the treatment programmes in place, and be patient with yourself......my hands aren't 100% and I do get "the droppsies" some days when they just give out, but I would say they are about 80% better now.
Just waiting for the other bits of me to follow suit........but I'm getting there.
You might ask your Rheumy to refer you to a compounding Pharmacist for your hands..... I did everything mentioned above, but the one thing that made a huge difference was a cream my pharmacist made for me. To the cream she added 5% dicloflonec, 5% DMSO (horse lineament), 5% lidocaine. She has also made versions that include menthol (tiger balm) and or capiscan. But getting the NSAID to the joints (the DMSO gets it right there) and the Lidocaine for the pain allowed this carving (and its been a while):
I won't say anything about the mobility aides except that they're not that big an investment, so I don't see the harm.
I will say that when Enbrel really works, it can do wonders. It can be like night and day. So do what you have to for now, but Enbrel may kick in fast and give you back your strength and mobility.
When not on Remicade, I need all sorts of mobility aids and often have difficulties with movement and strength in my arms and hands. On Remicade, I easily and securely carry around the 5.5 month old (more the size of a 9 month old!) and 2 year old in my care. The medicine can make a world of difference.
I have two sets of canes, two different types of crutches, a wheelchair, and spica splints. I have a jar opener and have improvised adaptations to things like my toothbrush - when my hands aren't working properly, I can't grip a toothbrush.
That's awesome Lamb! But how did you get the polar bear to let you on his back??
haha - sorry guess I picture you look like santa only gruffer... Seriously, that is amazing I love it :)
Louise Hoy said:
Love it Lamb :)
tntlamb said:
You might ask your Rheumy to refer you to a compounding Pharmacist for your hands..... I did everything mentioned above, but the one thing that made a huge difference was a cream my pharmacist made for me. To the cream she added 5% dicloflonec, 5% DMSO (horse lineament), 5% lidocaine. She has also made versions that include menthol (tiger balm) and or capiscan. But getting the NSAID to the joints (the DMSO gets it right there) and the Lidocaine for the pain allowed this carving (and its been a while):
