The Lupus Forum banner
1 - 20 of 32 Posts

·
Registered
Joined
·
7,800 Posts
Discussion Starter · #1 ·
Hi all,

As some of you know, I havent been very good lately. I still haven't got over that "flare" or whatever when I had the problems breathing and still have days of bad joint pain, extreme tiredness, headaches etc.

I can "cope" with most things including the days of such crushing tiredness that I simply can't do anything I had planned on. For example, I had to cancel my work on Friday (the only day that I work outside of home).

What I am having real trouble coping with is my lack of mobility. Although I can walk a bit and not very energetically, I have such incredible pain in my feet that standing is impossible. Now, when I say standing I mean standing 5 minutes. This means that shopping is torture as walking around the supermarket and then standing at the cash desk almost has me in tears.

When my son was choosing his birthday present last month, I ended up sat on the floor in the middle of the toy store as I simply couldn't take it any more. Another time, at IKEA (short 30 minute "in/out" visit) I ended up sat on the thing for baskets and handbags at the cash till. I got real odd looks from an old couple behind me!! Last week at dog training (the only activity I try to keep up) I did, literally end up in tears. The lesson was longer than usual and, worst of all, involved loads of standing around.

This foot pain thing is a big problem for me as I really can't find a way to relieve it. I wear bouncy shoes. I also have insoles which are supposed to help but, although they don't make it worse, they don't improve it either.

I also have extreme pain in my hands but that mainly affects me in the evening and at night, and, like most people, I don't walk on my hands :lol: The rheumy and neuro think that it is neuropathic pain. I feel as if all the bones in my feet and hands have been crushed in a vice, very sharp pain. My rheumy put me on cymbalta to try and help. Unfortunately, I had really bad side effects. She now wants to try "anafranil" which is another anti-depressant.

I guess the reason why the feet are getting to me is that it is stopping us have any semblance of normal life. Everytime we think of going somewhere with the kids I end up saying no as I simply can't. We can't go to the zoo, we can't go to a shopping centre, we can't go to a show or exhibition...

So, basically the question is...have any of you found any way to relieve this terrible pain - other than never walk or stand again?

Sorry to moan like this but this one thing has been seriously getting to me. I mean, I know it's all related to disease activity (this problem totally disappeared when I was in remission a few years ago) but, as we can't seem to control my disease activity more (and the rheumy is not worried as bloods etc are good and things are stable), I am worried I'll never see the end of this.

thanks,
Katharine
 

·
Inky
Joined
·
249 Posts
HI Katharine
I really do sympathises as you could be describing me some days.

Do you have a podiatry service where you live? Here in Manchester we have special foot clinics and my rheumy referred me. One thing they thought added to my pain was plantar fasciitis, which I think is a fancy name for fallen arches or flat feet. Certainly they said that having foot supports would help and it does. They are made to fit your foot by the clinic and they slip inside shoes (obviously can't wear sandals etc) and they do help. OK I still get foot pain and problems standing some days depending on how my lupus is behaving but once I got used to having such hard supports (they are not immediately comfortable) my mobility and pain was a little better. What using supports does particularly is relieve the foot pain at night. Some nights it prevented me from sleeping. Particularly if I had been so reckless as to walk anywhere for more than a minute or two :))

The other thing that really helped, but only whilst it was being done, was a course of acupuncture at the hospital physio department. I am going to ask for a repeat of that I think.

I take paracetamol and dihydrocodeine for pain - I get a lot of joint pain - doesn't always work but helps. A recent short course of anti-inflammatories has helped a bit too. Are you taking pain meds? Or anti-inflammatories?

Other things that help are warm baths, cold hot water bottles and copious amounts of chocolate and TLC.

Hope some of this helps.
Sara
 

·
Registered
Joined
·
7,800 Posts
Discussion Starter · #3 ·
Yep, I have special insoles made to measure. I think my problem was the opposite as I put too much weight on heels and ball of foot. They don't bother me and I'm sure do some good but don't touch this pain.

I have tried anti-inflammatories (have to take them almost daily for the moment anyway) and pain killers.

My feet are not too bad at night except when they get very numb or if I have walked more than usual but then they are not the only thing hurting anyway.

The chocolate helps :) but then doesn't it always? :lol:

and welcome to you too, it seems you are new :)
Katharine
 

·
elisabethm
Joined
·
512 Posts
Hi Katharine i also have problems with my feet and i got the insoles from the podiatrist at the hospital but he also told me to get ice to put on my feet and then to get some oil and get someone to massage my feet i will say that it has helped a bit but mine is a fallen arches the same as sjink i do hope you feel better soon Elisabeth
 

·
Inky
Joined
·
249 Posts
Thank you Katherine. Yes new here , although was on the list a long time ago when I first got DX with lupus. Decided I need to reconnect a bit as health is diving again and I know the importance of support.

The feet thing is a real downer sometimes, my partner suggested we borrowed a wheelchair last time we went to an art gallery and the thought really upset me. So I stupidly struggled around too may exhibits desperately looking for somewhere to get off my feet. With me it is not just the fallen arches, the bones in my toes hurt and the heel throbs too. Ankles can be painful if I walk too far. After walking it helps to lift my feet above the level of my hips... maybe it sends all the blood away from my heels for a bit ha ha. Oh well, still here thats the main thing.
Nice to connect with you.
Sara x
 

·
Registered
Joined
·
4,444 Posts
I too have done the sitting down on any little thing possible or even in the middle of a store on the floor as my feel also become extremely painful with a bad lupus flare. I think in my case it's just joint pain as it's that extremely achy sensation that one would normally get after standing/working on your feet for 12 hours or more but it hits me very early in the day when flaring.

Walking is easier than standing, and I mostly just put my feet up. I will also wrap ice packs around my feet.

If it's nerve pain for you, then there are many medication options. Amitriptyline, neurontin, and Lyrica are all possibilities to try. Good luck - hope it improves soon.
 

·
Registered
Joined
·
146 Posts
I had the same type of pain in my feet until I started plaquenil and that ended my foot pain. Every once in awile I'll have a sharp pain but nothing like it was.
 

·
Registered
Joined
·
2,173 Posts
Hi There,

I just went through the same thing as you and I did everything my doctor told me to do .. ICE>>> Then I had to take a wet towel and put it around my foot and pull it slowly towards me... excercise... you name it I did it...
And I like you could not stand that fact that it was interfering with the quality of my life.... I am a very active person...
My rheumy gave me in injection of cortisone in my heal..... now you have to stay off it for a few days.. To give it a chance to get better... I stayed off my feet other to go to the washroom... for three days... Then it took two more weeks.. But I would say my foot is about ninety percent better and it is great.... I had this done a month ago.... I am a much happier person now that I can walk.... I found standing in one spot was the worst for me...
Another thing you should allways wear a good supporting shoe in the house... Dont walk with slippers or bare feet...
Good luck to you...

Love Penny
 

·
Registered
Joined
·
1,640 Posts
Katherine,

I am sorry, you have been feeling bad for a while now. I take both, Cymbalta, and Neurontin for pain. I had terrible nerve pain all over my body, before I started taking Neurontin.

It helped a lot with that sort of pain, but then..I still had the really bad all over body ache pain, and Cymbalta helped with that pain.

Then, the headaches...so Cellcept was initated, and I take Percocet. Now, most days..I am well enough to enjoy.

I have resorted to sitting anywhere..I could, when feeling so badly or in so much pain.

Please, rather than miss out on family time..let your kids, and hubby take turns pushing you in a "modern" wheelchair. I say modern, because they are much easier to push than the old beat up wheelchairs.

My grandkids have done it with me, and while at first, I feel like all eyes were on me..I got used to it, and the kids and husband, seemed to make a game of it!

I do hope, you feel better very soon, Katherine.

Love,
Sandy
 

·
Registered
Joined
·
1,018 Posts
Use a scooter and race the kids. They will love it. And the relief from pain is unreal. I occaisionally take mine into the book store and I can never believe how good it feel to be able to 'walk' around and look at books and take my time without pain.

Also - I use Lyrica for nerve pain. Its great!
 

·
cinderashes
Joined
·
106 Posts
Katharine you poor thing, I really sympathise as i get sore feet too and you could have been describing what I feel! I have done the sit down in the store thing and often feel there just isnt enough seating in the world!

One thing that helps me (aside from the TLC and chocolate!) is to elevate my feet. If I know I am going to be on my feet i lie on the floor with my feet on the armchair for 20 mins or so beforehand - this seems to help any pain after as well. It gives me a chance to inspect the ceiling as well, though its hard drinking a cuppa in that position! :lol:

i rub my feet at night with a cheap cocoa butter - i dont think the cream matters i just like the smell! but i think the massage at least takes the edge off the pain so i can sleep.

I also use scooters and modern wheelchairs, they're great fun once you master the driving (I once nearly destroyed a shelf display at the local supermarket beacuse i got my left and right mixed up!) :rotfl:

take care, let us know how you get on
Ash x
 

·
Registered
Joined
·
7,800 Posts
Discussion Starter · #12 ·
Thanks Ash, that made me laugh - the bit about destroying the shelf display :rotfl: and thanks everyone else for your kind words and suggestions.

I have a neuro appointment tomorrow and a rheumy appointment in about three weeks. I am determined to try and find a solution to this but do accept that if I don't I need to consider something to sit on with wheels for longer days out etc. I don't want to "miss" the whole summer waiting for something that relieves the pain. Life is waiting to be lived!!!
I just need to find something I can drive myself as I need to be "independant" :lol:

Might be kind of hard to accept though.

Katharine
 

·
Registered
Joined
·
6,152 Posts
Good luck at your appointment tomorrow Katharine. I also get very bad pains in my feet and once it starts there is nothing I can do but take the weight off them and take as much painkillers as Im able. It happened recently at my daughters 30th birthday party. I had to leave early because I just couldnt bear the pain.

I have insoles as well that I got from my physiotherapist but to be honest I didnt find them of any help. Oh well....

I would be interested to know if your neuro or rheumy has any ideas as to how to manage the pain. Let us know how you get on

Luv n stuff
Joan:rose:
 

·
Registered
Joined
·
1,110 Posts
Good luck with your appointment Katharine.

My feet hurt to some degree most of the time, but they were definitely worse when i have plantar fasciitis. I was told this would go after about 6 months. Well, 15 years later it's still there but the degree varies.

I was told not to walk around barefoot (which felt cool so i had been doing it cos my feet were hot and achy). It felt as though there was a marble under my heel which i first got out of bed in the morning and took a while before my feet would sit flat on the floor, so i hobbled for about 20 mins in the mornings. Then it slackened off and gradiually the pain built up as the day went on.

I was told not to stretch my feet, bend my toes, etc. but to get them up when ever i had the chance and rest them. Not easy with children!

I found a long warm soak in a deep bowl with peppermint whilst watching TV helped a bit. I once had a good chiropracter / osteopath (can't even remember which she was now) who gave my feet a sort of massage (more clenching and squeezing than massaging the muscles) and this was invaluable. My feet felt great for hours after she had played about with them.

I always make sure my shoes are slightly higher at the heel than the ball of the foot (I usually wear 1 inch heels). During the day walking boots are the best thing for me, then squashy open toes at home. Clarks springers are not bad. I did get special insoles once to keep my arches up, but they nearly killed me - just casued other pain right under the arch of my foot.

I too would be interestd in any advice you get.

:love:
 

·
Registered
Joined
·
15,684 Posts
(((((((((((Katharine)))))))))))))) I'm sorry you are suffering with those feet of yours, it does sound very painful :hug:

I just wanted to wish you good luck tomorrow and I hope one of your docs can wave a magic wand and come up with some solutions and relief for you. Sooner the better :)

love
Lily
 

·
Registered
Joined
·
117 Posts
Hi Katherine

I had foot pain really bad a few months back and suffered with it for almost a year until I got fed up and saw a Podiatrist for my feet. He said I have nerve inflamation and gave me cortisone shots in both of my feet. Now that helped but they have to be done about every 3 weeks. But it worked for me. Might want to try it out if nothing else works. Hope your pain goes away! Nice meeting you!:)
 

·
Registered
Joined
·
66 Posts
Katherine,

I am sorry you are not well and I can surly sympathise with you because I have foot pain too and have had it for 1 year now. I have been all the routes that seem logical. I have been to podiatry; they won’t touch me and can’t help me. I have had cortisone injections in both feet and no relief. I have taken prednisone and anti-inflammatories some relief but short acting and if you do anything like walk it is very little help. I have been to a biomechanics specialist and she discharged me after 2 visits saying she can not help me and gave me special inserts which are of no help and finally I have been on morphine for the extreme pain, it helps, that is because you sleep!

I know I really don’t sound optimistic but it is hard to be when I have had the problem for over a year now and nothing seems to help. When you wake up and think you are having a good day you do a few things and then the pain comes back. You rest and when you stand up the pain is intolerable for a few moments and then it starts to ease and in a matter of minutes it is back again. It is a never ending battle.

I have very tiny feet and I have always loved them because they are so dainty. They look lovely in all kinds of shoes and sandals. Now I am down to 2 pair of shoes, all the sandals and heels are in the back of my closet. I wear a pair of black sneakers and a pair of white sneakers both a size bigger for the swelling and inserts.

I found putting my feet in the foot spa helps a bit but it makes them swell even worse. I have no answers for you, I wish I did. It has been a year now and the pain is not as intense as it was then but I still can’t walk, shopping is done on line and my whole life has been turned upside down. I have a disabled parking badge but I don’t find it helpful as I can’t do anything when I park my car closer.

The only way I can explain it to people s they can understand a bit better is if you suffer from painful hands and fingers due to arthritis then imagine walking on them. When you can’t walk, your weight gets out of control and then it causes more problems with your feet. You begin to walk funny and then you have problems with your knees, hips and back. It is a cycle that you can not seem to get out of.

I know my response is not an optimistic one but I hope you know you are not a lone and I can surely understand what you’re going through. If you find a cure or something that helps, let me know. My days are now spent doing cross stitching. I have done large geisha ladies, a full collection of them. I sleep a lot and watch TV. My life has changed and in the beginning I was so depressed. I have come around to the whole mess and now I just stay busy doing other things I enjoy. I look at it as this is the hand I have been dealt and I have to play the cards in my hand. I may not like it but fighting it only makes the matter worse.

Stacie
 

·
Registered
Joined
·
3,854 Posts
what hurts - it is your skin on your feet (neuropathic pain), or the bones/ joints ?

I was just a little confused when you speak about it feeling like your bones are all crushed up, as that sounds to me more like the way I experience joint pain in my feet (that walking on rocks feeling).

This is really important, coz it varies the treatment. With neuropathic pain it is just felt in the skin, not inside the foot. So it is good that you are seeing a neuro, as he/she can order nerve function studies to work out what is going on. I have sensori-motor axonal neuropathy, and have for many years, and was dx nerve conduction studies. I have them from time to time to monitor the progression - I loose motor function as well as having changes in sensation. Paradoxically I experience both pain and numbness, which is really weird.

anyway, let us know about how you get on with your appointments ...

feel better soon

raglet
 

·
Registered
Joined
·
7,800 Posts
Discussion Starter · #19 ·
Me again!!

Again, thanks so much everyone :)

Raglet, that is an excellent question and I'm afraid I really am not sure. I find describing pain so hard to do. It does feel as if my feet are broken but at the same time a kind of burning sensation and quite a lot of numbness. I also get pain and numbness though the numbness comes easier when driving, sitting, doing nothing and the pain is definitely very very much worse when standing. The skin is painful too. Sorry, I am hopeless about this.

I saw the neuro today and she wants me to try TEGRETOL for it. Lyrica is not at all reimbursed here unless you have epilepsy or diabetes.

She thinks it is neuropathic pain as increasing pred, anti-inflammatories, pain killers etc. do absolutely nothing for the pain in my hands and feet but help enormously for everything else.

I had an EMG in September and she wants me to try 5 weeks of the Tegretol and then have another nerve conduction thing which she'll do herself so that we can test that and see if the Tegretol has helped any. She wants to do the nerve conduction again anyway as my skin is less sensitive further up my arms than before. Other than that the neuro things have remaied stable.

I was supposed to see the rheumy on the 24th but the hospital have just phoned as the rheumy has cancelled all appointments for that day. And, can you believe it????? They asked "Do you mind coming in next week on the 10th instead?" I mean WHAT????? A hospital bringing an appointment forward!!!!!

Anyway, I'm delighted as I am sure I can remain thoroughly fed up about all this until next Tuesday which means I'll be determined to get some answers and be taken seriously.

Hubby, who knows my independant minded character (there are less polite ways to put that :lol:) found this fold up tricycle on the internet. Could be just the job but oh sooooo expensive (they reimburse them in France...). I could just see myself racing around on that. All I would need are the go faster stripes!! I like the tricycle idea because, although it would get weight off your feet, you'd still get the benefits of actually doing some exercise! Still we're not there yet. Just thought I'd share as it looks really cool.

http://www.diblasi.be/Folding_Tricycles.asp?Prd=Tricycles&Pag=Gruppo&Lng=en

keep well all and I'll update on how I go with the Tegretol.

Katharine
 

·
Registered
Joined
·
642 Posts
Katharine:hug:
I hope you can get some relief from that foot pain too.
I suffered foot pain for about eight months with varying diagnoses......arthritis...tendonitis. Steroids helped. Felt like murder to walk and even now I feel as if my socks are all screwed up under my toes all the time. Even though I don't wear them:hehe:
Plus the fasciitis thing which feels like your instep is tearing:worried: Steroids don't help.

i now live and die in crocs....can wear them for work too.

BTW my brother in law had a stroke and was left with a left sided weakness.
He now rides a tricycle.
He looks very much the slightly eccentric english gent on his trike (plus flannel trousers and panama hat) but these things are unremarkable in sleepy suffolk.:rotfl:

Take the best care Katharine everything crossed for you to get some answers soon.
 
1 - 20 of 32 Posts
Top