It's nearly 6am and I'm ready to give away any state secrets I can concoct. Foot has been jerking around approx. every 20 seconds or something for 4 hours with electric shock sensations. Ankle is swollen and so tender that it hurts if I look at it.
I have had this before, not this bad. Usually it's a one off & with months in between doesn't seem much point in asking for help. Can't take NSAIDs 'cos of high ALT & anyway don't think they touch it. I know it's nerve pain & I suppose if it lasted I could take Lyrica or maybe get a nerve block, whatever that is. I've tried a bag of frozen peas to no avail.
When I start moving around it's okay but I can't move around 24/7. I don't think this constitutes much of a discussion topic folks, but any handy hints for immediate relief would be much appreciated.
Could you try ibuprofen or diclofenac gels as you can't do the NSAID's orally?
Just wondering as well if any of the topicals the EM folk use might help ... think they are all prescription meds though .... alot of them have an amitriptylene/ketamine cream compounded. Might oral ami help?
Think this is a call to the GP's! Thinking of you.
Oh, Sybil sorry you’re having such a stellar time watching stars with no sleep. I love how you somehow sound slightly upbeat! What about trying a sleep aid if continues tonight, even benadryl makes me sleepy. If it continues I surely hope you at least call your GP, you never know until you ask. Hope things settle down and wish you well!
Thank you so much Jules and Rachael. A lot of words here that represent uncharted waters! Might have to have a paddle! So there's such a thing as topical ibuprofen? Actually that rings bells, might have had some once. It was as much use as a chocolate teapot but then I think that was for swelling & typical swelling-type pain. Maybe it would penetrate to the pinched nerves or whatever's going on. Sleep Aid! OMG, I have never done such a thing unless you count alcohol and I don't, not anymore.
I've taken what you've both said on board and will contact GP next week unless I do my normal thing and return to the usual okay-ish situation. And I will mention topical things and benadryl. That might be called something else in the UK but I'll look it up. Went to Birmingham today so missed the GP window but there's always Monday.
Hi Sybil you might already know about this but it helps me with nerve pain and enthesitis. It might not be the same thing going on for you but hopefully you find something that helps soon. I use the medi hot cold packs as ice packs because you can put them in a pillowcase and wrap them around your foot. Twenty minutes on (if I can stand it) and twenty minutes off. I try and do this at the first sign of enthesitis. I also place a pillow under the sheets down near my feet at an angle that keeps the sheets off my feet.
Recently I have been experimenting with trying to notice early signs of enthesitis and swelling in my feet and wrists. I have then being wearing feet and wrist support on and off during the day and especially after getting home from work. I dont know if it's coincidence or something else at play or just that the flare has finished for now but it does seem to have helped. I get a reddish circular mark about 3 - 4 cm above ankle on inner leg which I have noticed appears immediately before enthesitis.
Hope visit to GP brings relief if it hasn't gone by then.
Interesting that you get a red warning sign before enthesitis. I have a round patch of dark red skin on outside of my ankle which I've always thought was something to do with repeated inflammation of the joints there rather than psoriasis.
I have very little 'kit', I kind of fight shy of gadgets or even just-in-case meds because obviously a healthy young thing like myself doesn't need them. But a night of sheer torture has reformed me. So I'm going to get one of these hot cold packs, hey, I might get a whole set! I do have wrist supports though. But what are the feet supports you use like?
I'm glad things are going a bit better for you. Thanks for your reply, it helps.
MacMac said:
Hi Sybil you might already know about this but it helps me with nerve pain and enthesitis. It might not be the same thing going on for you but hopefully you find something that helps soon. I use the medi hot cold packs as ice packs because you can put them in a pillowcase and wrap them around your foot. Twenty minutes on (if I can stand it) and twenty minutes off. I try and do this at the first sign of enthesitis. I also place a pillow under the sheets down near my feet at an angle that keeps the sheets off my feet.
Recently I have been experimenting with trying to notice early signs of enthesitis and swelling in my feet and wrists. I have then being wearing feet and wrist support on and off during the day and especially after getting home from work. I dont know if it's coincidence or something else at play or just that the flare has finished for now but it does seem to have helped. I get a reddish circular mark about 3 - 4 cm above ankle on inner leg which I have noticed appears immediately before enthesitis.
Hope visit to GP brings relief if it hasn't gone by then.
The ankle I couldn't even touch is now just very slightly tender & I slept like a log. It's a weird disease eh? But I'm gradually getting the picture and I realise I need something in the cupboard that might help if, or rather when, it happens again. That episode messed with my head, partly because of realising how stupid I was not to have investigated it before.
I'm going to see my GP next week and see what can be done. Thanks Jules!
Jules G said:
Yes to the NSAID gels .... Voltarol, Cuprofen, Ibuleve .... most pharmacies now do their own generic (and much cheaper) versions.
And don't forget that amitriptylene is prescribed for neuropathic pain and is a great sleep help too.
Good for you Sybil! Odd balancing act we do trying to decide when we have a serious problem or not. Seems overwhelming and most people would run to urgent care yet we know it might disappear in a day or two and have enough knowledge to predict how the GP will likely respond.
It is a puzzling disease! That’s why I think some people don’t take our pain seriously enough. My painful feet are never swollen or red, and I try hard to disguise my limp. When I limp noticeably, certain people will ask why I’m limping. Hmmmm, I feel like they should know by now! Voltaren gel really works well for the pain on the tops of my feet. It numbs them. But, idk if it would work for neuropathy, Sybil. Ice packs and nortriptyline stopped my neuropathy. I hope your feet continue to feel better. PsA is really testing you lately, isn’t it? Thank God, like you said, the flares are usually temporary!
Puzzling disease it is indeed! Weird, unpredictable, illogical ... you name it. But Sybil, you young and healthy thing, you really do need an armory stockpiled with rescue remedies. I have a whole stash. Chances are if the doc says you might want to take a xxx occasionally, my response is "No need for a script, I've got some of that." Because for sure, whatever happens will happen late on Friday.
I use Thermoskin elastic wrap ankle support as it's light to medium support/weight and you can adjust during the day. I find these are cheaper then the arthritic thermal support and more comfortable if I do decide to wear all day. I have worn them all night with socks too but if feet swell this is not helpful. For my wrists I use the stronger arthritic support wraps. I am sure there are other brands but this is the one I have found seems to be good value for money in Australia anyway. I suspect I will progress to the arthritic support wraps for ankles at some stage but they are bulky and not cheap. The US Website might help http://www.thermoskin.com/products/range/elastic-support/ Also I am trying to save the heavier duty wraps in case it gets worse... I want something in the armory as I suspect it could get worse.
Honestly it's and experiment but paying attention to that red mark seems to help....I have started to notice I also get a smiliar mark on my inside arm below my elbow and above my wrist when they are playing up too.
And thanks I am feeling better last few days...steriod injections both hips and SI joints is helping tide me over...summer yummy too...two weeks hovering either side of 30 C° ...I know it's not helpful for everyone but works a treat for my smile muscles which has got to be good for the rest of me!
Anyway probably too much info in this post...but hopefully it helps
Sounds like it's a bit better. So glad Sybil said:
The ankle I couldn't even touch is now just very slightly tender & I slept like a log. It's a weird disease eh? But I'm gradually getting the picture and I realise I need something in the cupboard that might help if, or rather when, it happens again. That episode messed with my head, partly because of realising how stupid I was not to have investigated it before.
I'm going to see my GP next week and see what can be done. Thanks Jules!
Jules G said:
Yes to the NSAID gels .... Voltarol, Cuprofen, Ibuleve .... most pharmacies now do their own generic (and much cheaper) versions.
And don't forget that amitriptylene is prescribed for neuropathic pain and is a great sleep help too.
I do agree. Sometimes so many odd things crop up, life never used to be like this! At least I was sure it wasn't serious, with some PsA things it's hard to tell. But I did think it was unbearable.
Rachael said:
Good for you Sybil! Odd balancing act we do trying to decide when we have a serious problem or not. Seems overwhelming and most people would run to urgent care yet we know it might disappear in a day or two and have enough knowledge to predict how the GP will likely respond.
The PsA is going some, I agree. I think it could go either way, hopefully the needle will swing back to 'fair' on its way to 'excellent'.
There's not a lot of fat on feet is there? Perhaps that makes the gel a good option for foot pain generally, less to 'soak' through. Haha, I disguise my limp too. Why do we even bother?
Grandma J said:
It is a puzzling disease! That's why I think some people don't take our pain seriously enough. My painful feet are never swollen or red, and I try hard to disguise my limp. When I limp noticeably, certain people will ask why I'm limping. Hmmmm, I feel like they should know by now! Voltaren gel really works well for the pain on the tops of my feet. It numbs them. But, idk if it would work for neuropathy, Sybil. Ice packs and nortriptyline stopped my neuropathy. I hope your feet continue to feel better. PsA is really testing you lately, isn't it? Thank God, like you said, the flares are usually temporary!
I am going to get sorted. I've been wary of painkillers etc. and that's not rational I know. Seenie said:
Puzzling disease it is indeed! Weird, unpredictable, illogical ... you name it. But Sybil, you young and healthy thing, you really do need an armory stockpiled with rescue remedies. I have a whole stash. Chances are if the doc says you might want to take a xxx occasionally, my response is "No need for a script, I've got some of that." Because for sure, whatever happens will happen late on Friday.
Those are really interesting looking things, thanks for the link. I'll keep it & look for similar products in the UK. I'm wondering if the foot / ankle supports might help burning, sore, grumpy feet ...... or just make them hotter and grumpier, can't tell without trying.
A good walk in very supportive walking boots makes my feet happy. Almost everthing else does not. Car journeys .... whether driving or not, they're a killer. I'm going to see if support makes a difference, thanks for the push! And I guess the nerve pain might possibly be caused by inflamed, small joints in the foot getting rattled around, so support could help with that. Definitely time to experiment.
Yep, no zapping last night, thankfully.
That was good timing having the steroid injections in time for summer, like you say, one good thing leads to another. Keep smiling!
MacMac said:
I use Thermoskin elastic wrap ankle support as it's light to medium support/weight and you can adjust during the day. I find these are cheaper then the arthritic thermal support and more comfortable if I do decide to wear all day. I have worn them all night with socks too but if feet swell this is not helpful. For my wrists I use the stronger arthritic support wraps. I am sure there are other brands but this is the one I have found seems to be good value for money in Australia anyway. I suspect I will progress to the arthritic support wraps for ankles at some stage but they are bulky and not cheap. The US Website might help http://www.thermoskin.com/products/range/elastic-support/ Also I am trying to save the heavier duty wraps in case it gets worse... I want something in the armory as I suspect it could get worse.
Honestly it's and experiment but paying attention to that red mark seems to help....I have started to notice I also get a smiliar mark on my inside arm below my elbow and above my wrist when they are playing up too.
And thanks I am feeling better last few days...steriod injections both hips and SI joints is helping tide me over...summer yummy too...two weeks hovering either side of 30 C° ...I know it's not helpful for everyone but works a treat for my smile muscles which has got to be good for the rest of me!
Anyway probably too much info in this post...but hopefully it helps