I have been on WOW for 6 years now with blood results relatively OK.
However for last 2 years I have painful feet, soles and side and base of toe. Feet do not like heat. Cycles of socks on; to heat feet and socks off: to stop pain and red/purple colour. GP suggested fungus or venous leaking or dermititis/eczema I do not think fungus, but can CLL be a cause/aggravating factor? Any suggestions or ways to releave? Seems to get better with bicycle ride to raise HB and lower BP and possibly flush feet. If I have bad dream at night get hot and very red, painful feet. Is this related to night sweat or CLL. Seems to come from inside as I can sense it night before. Very light snack meal in evening good.
Was much better for a year then became much worse.
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Marchmouse
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What a distressing condition for you Marchmouse. Apart from as a symptom of diabetes manifesting as peripheral neuropathy, I’ve read of this condition which seems to encompass your symptoms but I couldn’t possibly know;- it’s called Grierson-Gopalan syndrome and is pretty comprehensive in terms of the health conditions it covers.
Also the condition Erythromelalgia describes these symptoms;
‘In others with erythromelalgia, the condition may occur secondary to various underlying disorders, particularly certain bone marrow disorders characterized by abnormally increased production of particular blood cells (myeloproliferative disorders).’
I’m not suggesting you have a myeloproliferative disorder however as your labs would indicate this but it’s interesting that some bone marrow disorders can create these symptoms. I’ve not heard of this burning feet issue in CLL but there may be others who can identify. (Myeloproliferative disorders cause blood cells such as platelets, white blood cells, and red blood cells to grow abnormally and is a different condition to CLL).
The links provide lots of ideas to explore medically and suggest home remedies to reduce severity. I hope you can find ways to help you. Perhaps your doctor could suggest referral to another kind of specialist to explore the cause. Problem is he probably doesn’t know whether you need a neurologist, dermatologist or endocrinologist. That’s the challenge with these kind of issues. There do seem to be tests which could be done to try and eliminate certain causation however. You may need to push for them if this discomfort continues.
Thanks for those leads. It does seem to me as though something is attacking my skin. I was quite happy watching TV then dozed off for 20 mins and woke up feet bright red and shiny and mod painful, room a bit hot 20deg C, stomache a bit congested. Stood up and stood on cold tile floor and colour and pain drained straight away, But a similar thing happened half way thru night. I cant be getting up all the time. Last night I was a bit hot and took off blanket. But temperature control is up the creek. Same conditions temp/blankets wise and sometimes syndrome others not. Does not correlate with BP, was 106/60/54 with AF. Same problem without when sinous rythm. No correlation with anything except temperature but not consistent.
Since your info I have seen my back spinal neurosurgeon who referred me to a neurosurgeon who found I had peripheral neuralgia and probably erythromelalgia ( my symptoms are exactly those in NHS website for this as well). He seems to want me to take a mild dose of gabapentin (which I will probably avoid as I already have too many pills and this seems just to be a brain confuser pill?). I will have a more detailed nerve analysis but as there does not seem to be any treatment I am in no hurry. What does surprise me is my spine neurosurgeon did not mention any peripheral symptoms 2 years ago though he did refer me to the neurologist and kidney surgeon to see if it was due to worsening severe spinal stenosis at L4/L3, which to me seems obvious cause. I will update after I see him again. Neurologist said no connection.
Hi Marchmouse, you are not alone in having CLL and also coming down with some form of peripheral nerve pain. I have been W&W for 15 years and two years ago developed erythromelalgia. The blood vessels in my hands and feet become inflamed, giving me an intense burning sensation, usually at night. My GP prescribed gabapentin for it, which does take the edge off symptoms, though I need 2,400 mg daily. From what I’ve read people with poor immune systems are at higher risk for this disease. Just one of the many things immunocompromised people like us may have to contend with. I wish you the best of luck, and hope you find compassion and relief.Jennyanydot
Gabapentin seems quite a strong medicine Did it give you any side effects?
New dawn did seem to give some other leads,
I have been suffering a version of this for 5 ish years now but last year was my first bad case. I have been able to manage it at a low level since then, but went extremely bothersome a week ago when I had to look after my wife after a knee operation with increased running around and rush plus she wanted the room temperature high and me low. Compromises; sock on/sock off.
I was managing the condition by trying to keep my feet at a constant temperature as I found if I let feet get cold then it was painful when they heated up. But this time the room,etc temp has been fairly constant but bad result, though started off by wife's request for hot room. However this summer, when everywhere was much hotter, I had only minor problem.
Anyway I have just researched Erythromelalgia and that is exactly what I appear to have. Which appears to be same as burning feet syndrome or Grierson-Gopalan syndrome
Jenny were you treated by a neuropathologist, dermatologist or endocrynologist? Which discipline does it belong under. I suspect neurologist as I have a very constricted spine channel/etc. The more I look into it the worse recovery trip seems.
My GP said he had never heard of Red Feet (syndome) and just suggested tight stockings which of course just made my feet red (der). So I desisted. My dermatologist did suggest fungus and an analysis found some spore that I have in my toe nails. I took lamisil. This may have helped in one spot. But I think just a red herring, as had no effect on red skin. She thought more of a vascular condition and keeping feet at a constant temperature.. Also checking full blood count to exclude polycythaemia rubra vera and B12 to exclude a possible cause of periphral neuropathy. I have had a few MRIs over the last few years due to moderate stenosis L3/L4 and bulging disc in L5/S1 My consultant recommended back surgery but warned that L5/S1 op would take 6 months to recover from. I decided to hold off until more necessary. Then I had bad fall which would have compressed the above and right side muscles go into spasm now if I use them. I did ask for MRI to check if worsened, but NHS physio would only recommend that if I was going to have an operation. I did not want to commit to op now and my wife needed knee replacement. I do experience mixed up signals in the general rectum area. So maybe this all leads to your suggestion of needing a neurologist referral. I will suggest this to my GP when I talk to her on Monday.Quite a lot for her to digest.
Whilst I don’t have the ‘burning feet syndrome’, I do suffer many of the back conditions you describe and can identify with the issues. My feet suffer excruciating cramp. I do hope you can be referred to the right specialism because the problem with the NHS is a few cm’s either way on our bodies and you’re in the wrong department! I know from experience! 🙄
Hello again Marchmouse, I actually have had capillary inflammation in my hands (unevenly, right hand worse than left) for about ten years, but dermatologists I asked about it had no clue as to cause. Then around two years ago it hit my feet. Neurologist suggested erythromelalgia, which often targets both hands and feet, as likely cause. I don’t think there’s a definite diagnosis beyond symptoms. Anyway, gabapentin is apparently the standard drug here in the US for all sorts of peripheral neuropathy. I was told to start the pills slowly, adding one every three days until it helped my burning feet. Eventually that took four 300mg pills twice daily. Along with meds I needed to make other adjustments. I can’t sleep with my feet completely covered, but my toes get cold with my feet uncovered, so I put bed socks over just my toes and sleep with my feet out. Sometimes I still have the burning sensation, but it’s worse at night when you don’t have distractions. The meds can make me slightly dizzy in the late afternoon when I’ve been working outside and am tired. I’m retired, and with Covid about don’t drive much, so it hasn’t really mattered. I know how horrible this can be, it ruined my sleep until I finally got meds. My best wishes for getting a solution that works for you. Let me know how it goes.Jennyanydot
I am still seeking how to manage my symptoms. A low dose of gabapentin has been prescribed but I have not taken up yet as I think it just is a way to manage pain but not to reduce other symptoms ie red feet skin probs. Trying to maintain a constant room temperature at night seems to help, but I have very variable body temperature and when I am asleep feet get cold then when I add a blanket get red and hot. I have started to use a hot water bottle to heat bed to begin with and then move it far away. But now as well as sock on/off I have waterbottle near/far/near/far. What I need is a body temperature or foot temperature controller like a heart pacemaker. Ideally I would have several of these pacemakers ( blood pressure, bp, testosterone, temperature, food intake/digestion. Neurologist seems to say makes no difference: get used to it: gabapentin. Resignation probably best then no stress.
Hey there Marchmouse, it’s Jennyanydot here…I certainly understand your hesitation to take ever more meds, but I couldn’t begin to handle my erythromelalgia without gabapentin. I find the redness of my skin, while always visible, waxes and wanes, stress and heat are major triggers. The gabapentin takes the edge off, it doesn’t cure. I can’t stand to have any covering over my feet at night, so I use a slightly weighted warm blanket over my body, with feet left uncovered. My toes would get cold, so I use bed socks over only the toes, with heels uncovered on the cool bed sheet. This odd combination seems to keep my feet from getting too warm and having a flare up, while letting the rest of my body stay warm in a cold room. I also have longstanding major back pain problems, managed with prescription codeine that I only use as a last resort. While I don’t want to take any more meds, my outlook has become take what you need to improve your quality of life. Better living through science.
You seem to be more advanced than me. But I go thru same fandango. Latest was to wear old fashioned flannel pyjamas. It worked last night beautiful normal foot skin this morning. The idea was to maintain my whole legs warm. at constant temperature with nothing tight around them. Unfortunately their are so many variables that one needs to keep track of at least ten and put thru some sort of stastical package to elimiante wrong events and find right ones. To a certain extent you will have done this and found out your best way of managing. I am presently experimenting/observing food intake, stress level, testosterone level, body heat, foot temperature room temperature, now may be gabapentin level.What temperature is your bedroom?. I have found 18 deg C good in summer. Now I keep at 15 deg. But I have always liked cold temperature and always used to keep feet out of bed clothes and wake up with snow on my pillow. Could be a history of too cold feet and body was not such a great idea. or more likely another irrelevent red herring.
We both suffer from long standing back problems. All nerves end up in spinal column so any impingement there could be a cause. In my uninformed opinion it is, but for some strange reason neurologists and neurosurgeons don't seem to agree, or if they do, do not emphasize it , or say my department not yours, and vice versa. I will keep you updated with my consultations to see if get anywhere.
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