Does anyone with IBS suffer from Hot Feet Syndrome?

[Carlettejaque]

It usually starts late afternoon with hit & cold tingling. Then my feet start to get hot until they feel like they are burning. I bought a pet cooling pad to put my feet on which helps a little. By evening it feels awful and for 45 minutes before bedtime I have to soak my feet in ice water with a block of ice in it untI'm my feet are painfully cold. I get to bed as quickly as possible and put a frozen container of ice at the bottom of the bed and keep my feet uncovered all night. In the morning they are relatively okay. If I don't follow this regime I get restless legs which keeps me awake.

[ziggypiggy]

That's been me for 25 years. The best thing that has helped is when I was on an SSRI antidepressant. Really didn't matter which one. Unfortunately they worsened some other conditions so I had to choose my poison.There are numerous causes and possibilities of would could be causing it. Testing and all the guesswork has driven many a sufferer crazy. Trying an SSRI is a pretty safe stab at relief that your doctor may be willing to try. There are lots of studies that show they can work on nerve pain. Paxil and Cynbalta were two that worked well for me.

[Carlettejaque in reply to ziggypiggy]

Thank you. I'm already on a high dose of gabapentin and next week I will be taking Azathiaprine to further suppress my immune system to help control an over active immune system and a neuropathic pain condition. I don't react well to anti depressants as pain control and don't really want to go down that road. It seems to me that Hot feet syndrome and RLS might be due to damaged nerves (perhaps in the brain. I had a stroke 4 years ago). Thank you for your information, it's great to know I'm not alone in this. My doctor and can't just think I'm being weird.

[ziggypiggy in reply to Carlettejaque]

I was thinking about you recently as my fellow cold water feet soaker. I hope you finally found relief. It's unfortunate you can't tolerate antidepressants well enough to give it a go for your hot feet. But I understand. I have issues with them as well and medications are always a fine balancing act between helping and side effects. I recently went through a real bad period of hot feet day and night and couldn't sleep much at all. I told my doc I needed to switch my antidepressant back to Cymbalta for the foot relief. I just can't believe how well it works. It doesn't work so well for depression in my case and there are sexual side effects. But, right now I'm willing to deal with them for the relief.

[Boudica1]

Hello Carlettejaque, sorry for the late reply but I've not been looking at this site for ages.Yes I have bowel problem's and many other health problem's and the same symptom's you describe with your feet and also my hand's. My hot hand's and feet problem's have been diagnosed as Erythromalagia, sorry forgot how they spell it and it's a tongue twister to say. They say it's rare and most GP's don't know of it so my thought's are it's just not being diagnosed due to lack of knowledge. May I suggest that you don't use the ice/freezing cold treatment as all my Drs and Consultant's have told not to as it can lead to Frostbite and on to worse problem's. Also the very cold treatment will only work for a short time and soon after you stop the burning returns and it become a vicious cycle. I hope you have found a doctor that can be of help my dermatologist and Rheumatologist have been a good help, I've also found out that the Pain management doctor's at the hospital can also help.

Good luck.

x

[Carlettejaque in reply to Boudica1]

Thank you. At least I now know what it is and can mention it to my GP next time i speak to him. I looked it up and it said it's helped by aspirin and Nisaids and gabapentin. I am allergic to aspirin and can't take ibuprofen as I have stomach issues. (Erosion). I'm already on 2,500mg of gabapentin daily. It's a very high dose which I've been taking for 3 years. I take that for neuropathic nerve pain (which was originally caused by an allergic reaction to an insect bite) which feels like every inch of my skin all over my body feels like it has been wrapped in pickles, thorns, needles, nettles and holly leaves. Before i started the gabapentin i couldnt sit down or lay down as it felt like all the prickles were being driven deeper into my skin. But i couldnt stand for long either as i have a bad back. I couldnt wear my clothes and spent 3 weeks wearing a cold damp bathrobe. Eventually they put me on steroids which i am now dependant on ( the allergy caused my immune system to kick off also giving me itchy rashes. If i reduce the steroids the rashes come back) Then came the gabapentin which works wonderfully but makes me feel drunk! The steroids and the Gabapentin don't help the hot feet but I do find that the cold water and cold gel slippers are the only thing that helps. They are very effective for me. If i dont get my feet cold at night by doing that then i get restless leg syndrome. That is an awful feeling. You cant sleep with it.I have to be careful with new medications because I also have severe IBS. Many medications I just can't tolerate. I'm supposed to take blood thinners as I had a TIA five years ago but couldnt tolerate them. Due to the stetoids i have osteosporosis but cant take alendronic acid or have the injections or infusions (because it sets off my already over active immune system). I have multiple health problems and this hot foot problem just adds to everything else. I feel I'm a mess.

[Boudica1 in reply to Carlettejaque]

I know the "I'm a mess" syndrome all to well. I can take some med's as the have bad effect on me, the normal one's the like to use like the antidepressant's to control the pain and heat gave me nightmares and the cream to help with it useless. I have Bile Reflux Gastrisis (erosion) so have med's for that as some cause stomach problems and whatever helps with the Diverticular (bowel) Disease. The lungs are dodgy along with the old ticker and to finish it all of the skin has Jessner's Lymphocitic Infiltration and we've been trying to get that under control for years as the rash's can drive me crazy so on two different anti Malarial's, oh I almost forgot Sjogren's Syndrome. If I was a horse they would have shot me by now.GPs can and do have problem's with the rarer oddities so can only do so much and also either don't know all of the blood test's and/or not allowed to order them as those one's only the consultant's order. Good luck an hope someone somewhere at the GP's or hospital can help.

[Carlettejaque in reply to Boudica1]

I've been researching things and I have all the symptoms of Sjorgrens. Hot feet syndrome is a symptom. Its caused by Smal Fibre Neuropathy. The test for sjorgrens is a lip biopsy. Blood tests don't show it. I will be getting in touch with my GP soon.

[Boudica1 in reply to Carlettejaque]

Good luck but remember a lot of autoimmune diseases can mimic each other so it can be a long road to a diagnosis. I'm what they call sero-negative as the blood's are up and down and mainly borderline and the Lip biopsy was inconclusive but the consultant diagnosed me anyway because of the extremely dry eye's and no tears at all even if I chop a sack full of onion's, I used to be a chef so often had to chop them. Dry mouth, nostril's and dry everything from top to toe, plus most of the other symptom's/diagnosis. The treatment is the same for both positive and negative Sjogren's and is mainly for each of the symptom's, I'm prescribed Hydroxychloroquine and Mecaprine mainly for the skin and the pains and spasms in the feet so far it's good with some of the pains in the feet but the rashes are very stubborn and refuse to go. If it doesn't come under control then the next drug they can use is a low dose of a chemo one and I can't remember the name and hoping I don't need to go on it. So far not found anything that works really well with the Erythomalalgia so have to do what I can until it get's to the stage of referral to pain clinic. I do have prescribed painkillers but try to limit them if I can as they can cause constipation which isn't good for the Diverticular, plus the can be addictive as well. Take care. x

[Carlettejaque in reply to Boudica1]

Please can I ask what your rash looks like and what provokes the rash? My daughter suffers from Lupus and my son has health issues too, so a faulty gene may run in the family. Have they ever tried you on Prednisilone steroid?

[Boudica1 in reply to Carlettejaque]

My rashes are mainly on my back and never sun exposed in fact they only bits of me that are exposed are the face and hands and thats only for a short couple of minutes, nothing provokes them they just are there. They are red and raised and can look a bit like hives but last for weeks and months, some can change into Annular/round shape and have multiple spots with a clearing in the middle and slowly expand, other's again breed more connected spots and go arciform or arc like. The Dermatologists don't like better still to write it all down for themto prescribe Prednisolone due to the long term use causing problems but at times GPs have when my lungs are flaring or I get a chest infection and yes the rash does disappear for a couple of weeks and ANA blood test's? But you need to remember that about a third of Sjogren's people are like me, Sero-negative. There are test's that can be done like the lip biopsies, and checking to see if your eyes are very dry and they can if you have repeated problems with the Partoid glands scan them as well but most consultants don't specialise in Sjogrens or Lupus and will not take things further if the blood test's a negative. They forget that a third are sero-negative for some reason. Did you know that Sjogren's is known as the little sister of Lupus and that some types of Lupus can only affect the skin? As yet the NHS does not test family for possible Genetic links unless it's for something very serious as far as I know they just go by your blood tests, personal medical history and very close family if you know it, the trouble is GPs and hospitals doctor's don't read up on everything in your notes only what they have been told so the onus is on you to not only remember but to write it all down and then to write a list of all your symptoms in diary form, it help's the consultants a lot and you because you can bet your bottom dollar that you will leave an appointment and suddenly remember something.

I hope this has been of some help and makes sense as I'm having a bit of brain fog and a nagging headache.

x

[Carlettejaque in reply to Boudica1]

Thank you. You've been a great help I was under a consultant dermatologist at Worthing. He was a complete idiot! Waste of time seeing him. I have severe IB S (can only tolerate 10 foods.) and travelling is a nightmare for me. Getting to Worthing was gruelling. I only managed it because my son took me and he worked there and knee all the toilet stops along the way. During the pandemic they moved the consultant to Shoreham. I couldnt get that far so we spoke on the phone instead. All he and my go are interested in is getting me off the steroids. Tried and failed with everything. I'm gradually increasing my Gabapentin (for neuropathic skin pain which affects every inch of my skin) to the point I might be able to lower the steroids (10mg per day for the last 3 years). But when i do lower them i get extreme skin hypersensitivity and my rashes get worse ( mostly pin prick rash in groups but with hives mixed in). The gabapentin at 2,600 mgs a day is too high and causes a my drunk feeling to be worse. I'm finding it dangerous. My balance has gone. Doctors aught to be msde to try some of tbe medications snd procedures they prescribe for their patients!Thanks for listening to my ramblings. It's good to know one is not alone.

[Boudica1 in reply to Carlettejaque]

You'r not rambling at all and it's good to get thing's of your chest, I also had a few idiotic consultant dermatologist's at first and a couple of naff rheumatologist's but to be fair to the rheumatologist's there are a lot of different diseases that come under their department so there are different specialist's within that dept., making it hit and miss I'm afraid. Add into the mix a whole host of health problems and it's a minefield not helped by some health authorities insisting that patients have to have positive blood's for a diagnosis for some diseases even though all the different medical science bodies around the world have clearly stated that some people don't always have the positive bloods and can still have the disease which leave's a lot of people at best on a crazy hospital merry go round and not one doctor taking control or coordinating the other's and their treatment option's. At time's is did seem as though the different department's didn't communicate with each other but at the moment I have a good team despite the mayhem caused by covid and I'm able to see my dermatologist face to face as he found the same as me and that phone consult's are useless for something like the skin for obvious reasons. X

[Carlettejaque in reply to Boudica1]

Hi, remember me....your fellow Erythromalgia sufferer. I've tried Tadanafil (cialis) but it made thjnhs worse. Then my doc gave me propranolol. It just put my blood pressure down too low but did nothing for my feet. I discovered Ibuprofen makes it worse. My doctor now wants me to trial Capsicum cream for 4 weeks. I'm slightly worried because I have lots of little cracks and splits on my feet and I really wouldn't want to rub capsicum cream into them. Have you ever tried it? Just wanted to ask. Hope you don't mind.

[Boudica1 in reply to Carlettejaque]

Hi Carlettejaque, yes I have tried that cream but it did nothing for me at all. It appears it's trial and error I'm afraid because what works for one may not to someone else. I was prescribed another cream to help with itching but had to rush to the bathroom in less than a minute to wash it off in cold water because I must have reacted to it as it turned my hands into what felt like a ball of fire, can't remember the name of it but GPs won't be prescribing that one again either. So at the moment I do what I can to try and keep them on an even keel, don't get your hand's and feet get too cold for to long as you could give yourself frost bite apparently according to one Rheumatologist I spoke with but I also have a problem with my feet getting to cold anyway as that makes them very painful. It's a bit of a rock and hard place at the moment and damned if I do and damned if I don't. Some say I can be triggered by some foods but mine isn't the only thing certain foods affect me with is the stomach and farther down if you know what I'm saying.I hope you find what works for you soon to help ease things and do be brave and try things it could well be the right one for you but you won't know until you try.

Good luck and take care.

X

[Carlettejaque in reply to Boudica1]

Thank you. I'll stay positive.