I know what you mean grandma j - I fought against the steroid injections but pain was so bad I could hardly walk or sleep. It’s an individual choice but I am so grateful for the 5 week respite! With regard to fusing - I’ve heard it’s great for pain so if they offered me that I’d take it. I’m not getting too excited about the enbrel as last rheumy said yes then changed his mind! The clinic said my insurance company is one of the worst - typical - so trying not to get hopes up just yet…
I apparently still have a lot of swelling in my feet even with the steroids but I have new orthotics which are helping me a lot.
Fabulous news, Golfnut! As Jules says, you are SO in the right clinic now. And the best thing is, that you see at least two specialists when you go there for an appointment AND you keep your regular rheumatologist as well! No system is foolproof, but I think it's pretty safe to say that they probably have it right!
Today you made major progress!
Thanks seenie! They said they will take over my care so I don’t have to see the current useless rheumy I have! The nurse will be contacting me in a day or two and I go back for a review in February? They were so efficient and nice. Have been x rayed from head to foot …
Am very grateful to you for suggesting this clinic and very lucky that I moved close enough to be able to go
Golfnut, do you use Voltaren gel? At first it didn't seem to work, but lately I've been applying it once or twice a day and it really takes down the pain. I have to admit I often take an ibuprofen too, but I still think the Voltaren gel works. You need a prescription for it. My pain varies, and I never lose sleep from it, but I always take Tylenol pm at night and the V gel settles down the pain enough to enable me to sleep. Today I stepped out of our pickup truck onto a rocky surface and the pain almost took me down. I hobbled into the restaurant. But, the intense pain settled down once I sat for awhile, even though it hurt the rest of the day, it wasn't killer pain. I would definitely get injections or consider fusions if the pain was intense all of the time. :-)
Golfnut said:
I know what you mean grandma j - I fought against the steroid injections but pain was so bad I could hardly walk or sleep. It's an individual choice but I am so grateful for the 5 week respite! With regard to fusing - I've heard it's great for pain so if they offered me that I'd take it. I'm not getting too excited about the enbrel as last rheumy said yes then changed his mind! The clinic said my insurance company is one of the worst - typical - so trying not to get hopes up just yet....
I apparently still have a lot of swelling in my feet even with the steroids but I have new orthotics which are helping me a lot.
Hi grandma j
Unfortunately I can’t take nsaids - even the gel, as they give me really bad palpitations. I have tried tylenol but found it doesn’t really do anything much and at this stage I am not ready to reach for stronger painkillers (not to say I won’t in the future if needed.) That sounds horrible the stepping down onto a rocky surface pain! I expect you will know when you want to investigate further options for pain relief - hopefully you can continue to manage the pain for a long time to come …
I just had this same experience yesterday. It was really cold, so I went and walked for about an hour on the tread mill. Towards the end, my right foot was really numb and had the same feeling you described. I have also been having the numbness, mostly on my left foot in my toes. I really notice it when I'm trying to go to sleep. I have noticed it in my hands, mostly left hand fingers, when I'm doing yard work or something that uses my hands for long periods. It's a bummer. Hope your doing better. I just went to my doctor for blood work and brought it up but he didn't offer much (wanted to rule out diabetes).
TaraLynn said:
I get burning pain in the bottoms of my feet when walking and also when standing for long periods. It seemed to lighten up for a bout a month but is back again. I also get the same burning in my hands with use when doing things like vacuuming, folding laundry, cleaning...I guess again with any increase in activity. The pain goes usually goes away with rest. Very strange...
A few months back I was away with my husband on one of his business trips. I went to the gym and hit the elliptical for 20 min. During my time on the elliptical my toes on my foot went numb, felt as though something was tied around them restricting circulation. I got off and checked to see if anything was wrong, nothing there and again the feeling went away after.
Bluesky said:
I just had this same experience yesterday. It was really cold, so I went and walked for about an hour on the tread mill. Towards the end, my right foot was really numb and had the same feeling you described. I have also been having the numbness, mostly on my left foot in my toes. I really notice it when I'm trying to go to sleep. I have noticed it in my hands, mostly left hand fingers, when I'm doing yard work or something that uses my hands for long periods. It's a bummer. Hope your doing better. I just went to my doctor for blood work and brought it up but he didn't offer much (wanted to rule out diabetes).
TaraLynn said:I get burning pain in the bottoms of my feet when walking and also when standing for long periods. It seemed to lighten up for a bout a month but is back again. I also get the same burning in my hands with use when doing things like vacuuming, folding laundry, cleaning...I guess again with any increase in activity. The pain goes usually goes away with rest. Very strange...
A few months back I was away with my husband on one of his business trips. I went to the gym and hit the elliptical for 20 min. During my time on the elliptical my toes on my foot went numb, felt as though something was tied around them restricting circulation. I got off and checked to see if anything was wrong, nothing there and again the feeling went away after.
If any of you get proper cramps, have you tried sleeping with a bar of perfumed soap? I get cramps lots. In my feet, my knees, my hands and my ribs.Anywhere where my psoriatic arthirtis hits. They can make me howl in the middle of the night and not just pace my bedroom but my whole house.
I heard about this ridiculous soap stuff and put a cheap supermarket bar of soap in my bed. Synthetic fragrance stuff in it too. No cramps the first night or the second. Got confident then and rubbed this dry bar of soap everywhere cramps happened. and then slept with the stupid bar of soap in my bed. It's now three weeks or maybe even four, and I've had no waking up nighttime cramps.
Insane isn't it? But who the hell cares when it just costs me £1 for a silly cheap supermarket soap. Apparently you've got to change it regularly, so I must do so soon.... My partner, my cats and my dog collectively think I've lost the plot. Maybe I have. But who cares if I'm not jumping out of my bed at 2 or 3 am in agony marching all over the place. Every little helps doesn't it?
I'm your acid test. I've had cramp, often very severe, with occasional months off for good behaviour (which I think correspond with the best disease control) for years & years. Before starting treatment it would come on at any time of day, without warning e.g. while I was giving a talk to an audience of parents and governors at school. That was probably the only bit they found even mildly entertaining. These days the cramp's not too bad and restricted to nighttime. So I'm good to go with the soap. I might not rub it on myself as the cramp and psoriasis go for the same parts of my feet and legs. Will report back!
Poo therapy said:
If any of you get proper cramps, have you tried sleeping with a bar of perfumed soap? I get cramps lots. In my feet, my knees, my hands and my ribs.Anywhere where my psoriatic arthirtis hits. They can make me howl in the middle of the night and not just pace my bedroom but my whole house.
I heard about this ridiculous soap stuff and put a cheap supermarket bar of soap in my bed. Synthetic fragrance stuff in it too. No cramps the first night or the second. Got confident then and rubbed this dry bar of soap everywhere cramps happened. and then slept with the stupid bar of soap in my bed. It's now three weeks or maybe even four, and I've had no waking up nighttime cramps.
Insane isn't it? But who the hell cares when it just costs me £1 for a silly cheap supermarket soap. Apparently you've got to change it regularly, so I must do so soon.... My partner, my cats and my dog collectively think I've lost the plot. Maybe I have. But who cares if I'm not jumping out of my bed at 2 or 3 am in agony marching all over the place. Every little helps doesn't it?
What creams do you use? I have foot pain and can not get in the 10,000 steps. I do what I can the exercise though.
Hi there BJ1
I use an anti-inflammatory gel based on Diclofenac diethylammonium. It helped a little bit. I’m fortunately now on a drug called Apremilast which has helped enormously.
Thank you for answering. I will ask my rheumologist about using these products. Thank you! My best to you and living with our friend, PA. Barbara