My poor feet....and my little red miracle machine!!!!

[jeanabelle]

I have been on several biologicals for awhile now and because I have had extended periods when I was off all medication due to switching from one drug to another......anyhow the result has been that the disease has been allowed to spread to areas that were disease free before. I now have pain and inflammation in my feet and ankles.

I used to read on this site people with affected feet and ankles and wondered how they were able to walk at all. Now I know what they were talking about. I can walk but I still have pain. I have to say that I walk with a limp as my knees are in really condition so walking for me is compromised anyhow.

What I want to know is what I can do to ease the pain in my feet, especially at night when I go to bed. Also after a day on and off my feet when I finally get my feet off the floor at about 9 o' clock and stretch out as much as possible on the sofa the pain seems to get worse.....maybe I'm just able to dwell on them more, I don't know. All I know is that my ankles hurt and it goes up my leg.....the rest of my foot and toes sort of go mad with a serious case of manic pins and needles plus the usual pain. It takes me ages to fall asleep (and i have a wee helper for this) with this sensation in my feet.....I don't know where to put them to get ease.

I would be really gratefully for any advise as to what I can do to relieve this.....I know it won't go away!

I have to say that I got great advice on here from someone(sorry I don't remember the name) about a kettle for one! It is fabulous and I highly recommend it to anyone who has problems with strength in their hands (which is about 99% of us I'd say). I have a cradle for my kettle but it still causes a lot of pain trying to fill it.

Anyhow the kettle is like a mushroom with a cap at both ends, I have a lovely red one. When it was highlighted on here it was described as looking like one of those posh expresso machines.

It has been a godsend to me and I know I will be saving loads on my electric bill as you only boil exactly what you need. I highly recommend it. Mine is a morphy Richards and cost 20 something...but worth it's weight in gold!

The sun has finally come out here in the northwest of Ireland......we are always the last to get it.....I'm looking forward to sitting in my garden with a nice glass of Melbec and watching the dogs playing.i will ignore that there is weeding I am not able to do and the tree and hedge trimming is now at head night. I'm 5ft and have to duck to get past my overhanging trees. I'm going to phase out all things negative and just feel the warmth of the sun on my well factored skin!!!

Yes I will still be in pain and my personal situation could be better but for now the sun is shining and in my wee world things are alright, not fantastic but I know they could be a lot worse......so I'm going to take my small pleasures where I get them......hope you all have a great week-end in the sun and for the week to come. XXX

[Hidden]

Hi Jeanabelle,

I do hope you have been able to enjoy the sunshine- I suspect most of us with RA really do have to ignore the weeding and many other garden chores we did without thinking. Regarding the pain in your feet at night- the only thing I can suggest in pain meds. I absolutely have to take them before I go to bed, my feet hurt so much...and no that is it because we have more time to think about it, it is the very nature of RA that when we stop doing physical activity then it all starts to really hurt. I have only and this disease for about a year and have het to find something that will help ease it- all I hope for now is remission and will just have to put up with it. Sorry I cannot offer any solution...

My Occopatnal nurse told me about these kettles - am managing ok with the one I have and obviously over filling is not a good idea- simply cannot lift it, so have for many years just filled what I need.

Enjoy your beautiful evening

Best wishes

Kate

[jeanabelle in reply to Hidden]

Thanks Katie, I do take paracetamol going to bed and I also take 50mg of chlorpromazine. I have been taking this for years as I have been inflicted with depression since I was in my early twenties. This does help to "put me over" most nights but since my feet have become affected even that isn't doing the trick. Although I'm on anti-tnfs I still take 100gm of tramadol in the morning and another if I really need it during the day. These tend to make me a wee bit "la la"......I have difficulty with my memory and any more than two items of detail and the rest just takes flight.....if you know what I mean?

I think I will just have to do what ever is right for me.....I will keep the tramadol at my bedside.......just in case. Thanks for your help and I hope you are well. XXXXX

[jeanabelle in reply to Hidden]

Your right about having more time to notice the pain Kate. I'm only starting to have inflammation in my feet so at the minute it more than likely is not as severe as others on here. It seemed like one minute is was alright and then suddenly I had this soreness in my feet that I didn't have before.....it has moved on now to pain! There are very few joints now in my body that aren't diseased.....gets me down sometimes but it's like the weather, there is very little that I can do about it. Take my meds, rest, exercise moderately and hope for the best......

I'm sitting here in my wee back sitting room and the dogs are in the kitchen with the back door open so they can play and run about without me. As I sit here my feet are throbbing......maybe it's just because I'm talking about them!!!!

Thanks again Kate for your wise words......keep them coming....XX

[Cotti]

After years of feet problems & increasing pain levels with little interest shown by rheumatologists, I paid to see an orthopaedic surgeon who told me all my toes has dislocated & feet "dropped" & I was walking on bones underneath my feet. I was furious all if this had been overlooked by rheumatology who just concentrated on disease management not mechanical damage. I had major surgery on both feet, ( which was pretty drastic), & which I wrote about in an NRAS magazine. Today, 3 years later, my feet are fantastic compared to what they were. I can wear pretty sandals, the Hobbit feet are gone. I would push to see an orthopaedic foot surgeon to find out exactly what is going on. Be assertive, your feet, your quality of life. I've got my life back since my surgery even going to Zumba classes! Sometimes we need to think outside the box & not expect everything from a rheumatology department. For me it was the best £180.00 I ever spent seeing that wonderful orthopaedic surgeon.

[jeanabelle in reply to Cotti]

Hello Cotti, thanks for getting back to me......good god you must have been in agony....what I have is nothing compared to what you suffered. I have a friend and she had an operation on just one of her toes.....she had a "plate" put in. U fortunately it was worse than the original complaint! She had it removed and is now back to where she started. I understand what you mean about rheumys focusing only on intreatment. I have a really, really great team but I had to ask my dr to look at my knees as I have lost about two inches in height (when you are 5ft that is quite a bit) as my knees are so bent. We was taken aback and said he would get me some physio to see if it was too late to get them straight again!!

This really is a terrible disease isn't it? If I'm sitting down you wouldn't know there was a thing wrong with me..... Did I ever tell mention the butyoudontlooksick.com site....it's great for people like us. I must put it back up on the blog again.

Anyhow, thanks again and I hope the weather is grand where you are. All the best. Jean XXX

[DandyLad]

I can totally identify with you about pain in your feet. What I have is a soft foot ramp which goes onto the end of my bed and raises my feet, and with feet also being hyper sensitive I have a foot cradle, this lifts up the duvet from my feet. Both of these I find very helpful and when you can raise your feet and make sure that they are higher than your bottom. There are other sites on line where you can find specific feet and toes exercises. I wish you good health and I hope you find the right things that can help you and your feet.

[DandyLad]

I am not too sure if my response was clear or not. When I mention raise your feet... I should have said 'on a separate note and when you are sitting down if you can, raise you feet up and make sure that you feet are higher than your bottom. That was given to me by my RA consultant and she even went as far to say 'If you can get your bottom to a wall, raise your legs up the wall' I don't think I could get down to the floor let alone put my feet up a wall. I hope that is clearer for you.

[jeanabelle]

Hello DandyLad, it's great to hear from you. I know you are new on here and had a shaky start but never mind, some people are disturbed and the best thing is to just let them go their own way. Thanks for your input. Ido have a cushion for elevating my feet, the problem is that I have really bad knees and when my feet are elevated it effects my knees!!!! Nothing is ever straight forward for me since I started this awful disease......I really has changed my life......it is unrecognisable now. But anyhow, I'm not going to dwell on it now.

The sun is out and I'm going to enjoy it for whatever length of time it last, which is never very long here.....I wish you all the very best and look. Forward to your postings. Jean XXXX

[oldtimer]

I'm not sure what you mean about not being able to manage the tipping kettle?

I use a lightweight plastic jug to fill the tipping kettle with enough water for one or two cups.

I don't need to lift the kettle at all, it just swings over to pour the hot water into the mug.

i also use a pillow at the bottom of the bed both to keep the weight of the lightweight duvet off my feet and to support whichever foot is on top when I'm lying on my side. it also stops me pointing my toes - which gives me cramp.

[jeanabelle]

Old timer, I got my kitchen done up and changed my lightweight kettle for one of those fancy looking Italian ones...... Not one of my best decisions!! .looks great but not very functional. The light weight one went to the local animal rehoming centre charity shop! Not a smart move on my part. Again though, this wee red miracle is just great. I have a plastic cup for the right amount of water needed for my coffee mug.....also lightweight. It boils in seconds and no stress on my hands and wrists at all.....wonderful.

I have a lightweight duvet too but that really isn't a problem for me as because my knees are so bent I can only lay on my two sides. That can also be difficult too with cushions to elevate my feet. I know medication doesn't always have to be the only remedy but in my case I'm afraid it's looking that way.

Thanks for you reply old timer. Even if it doesn't help me there are so many others suffering that I'm sure it will help others. All the best and hope you have the sun shining down on top of you today. Jean XXX

[Hidden in reply to jeanabelle]

Hello Jeanabelle

Can I ask where you got your kettle from? Sounds like just what I could do with

Thanks Sue

[jeanabelle]

Hello sue, I got it on eBay.....where I do almost all of my shopping now.....it's a Morphy Richards and cost just over £20.00, I think, it wouldn't be much more than that. It's great sue, don't know how I ever manged without it. I heard about it on this site, so who ever mentioned it I want to send them a great big thank you. Hope it works for you too sue, can't see why it wouldn't. All the best. Jean. X

[Case]

Dear Jean,

It may have been me re kettle. Glad it worked. Mine is still going strong and means I can have tea till my hearts content (a lot!!)

I too had / have terrific pain in feet. What helped me significantly was expensive I'm afraid. It's a mechanical bed which goes up and down in different places. It goes up at my ankles, works wonders , means I can get too sleep. I find the painkillers do not work, the bed is a God send. If u get dla u don't have to pay vat which brings cost down. Single bed cost me £1100, but it is worth it.

Take care.

[jeanabelle]

Hello Case, my wee red miracle machine is just brilliant, thank you very much for spreading the word about it, like your bed it is a god send.

As for the bed.....well I'm afraid it is way out of my price range.....I just spent £450 on a really good memory foam mattress which I have to say is great now.....it was like laying on the front door for the first few days but I've it broken in now.

Thanks again for the wee machine and I hope you are doing well. Enjoy the great weather. Jean XXXX

[Hidden]

Hi Jean,

Have you thought about the possibility that this may be referred pain? I had pins and needles in my feet and pain in my lower leg for some time before actually going and seeing someone about it. It turned out to be caused by a trapped nerve in the lower spine as a result of spinal stenosis.

I think it may be worth mentioning it to your GP. There are also a range of pain killers around that focus specifically on nerve pain and may give you better pain relief than your current meds alone. xx

[jeanabelle]

That's very interesting Creaky. My rheumatologist looked at my knees that are bad and at my feet but said nothing about them. I am seeing my rheumy nurse on Thursday and I will bring it up there. Thanks for that Creaky......your name, Creaky, reminds me of my granddaughters imaginary friend.....his name was Creaky Dobbins.....Creaky was with us for quite a while.....we still tease her about it even though she is no 20......seems like yesterday. All the best and thanks again. Jean.