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    • #16806
      Jean Mellano
      Participant

      rick, sometimes i feel pins/needles on on outskirts of sole of my left foot (PD affects my left more than right side).  it is sometimes so frustrating trying to figure out if a symptom is PD related, age, drug side effect or something else.  i believe this may be related to my failing balance on left leg.   i think for the most part doctors have no clue about this disease and sometimes if i tell my neuros about a symptom, i feel like a hypochondriac or symptom is psychosomatic

    • #16805
      Rick M
      Participant

      I was diagnosed with Parkinson’s in 2017.

      In addition to the normal PD symptoms, the balls of my feet have been getting increasingly numb over the years.  I first noticed it years ago getting into my hot tub.

      Recently, I sometimes feel a burning sensation on the bottom of my right foot.  Recently, my right foot is also starting to hurt  when I walk feeling like there is a lump in my sock between the ball of my foot and my toes.

      My toes are also feeling like they want to curl and part of my daily workout is stretching them open which is minimally painful.

      I am posting this question because I just checked about the pain with my Parkinson’s doctor who is a neurologist specializing in Parkinson’s disease who responded that it is probably not related to my Parkinson’s and I should see my primary care doctor about it.

      I found this article correlating foot pain — Peripheral Neuropathy — and Parkinson’s but it is based on sparse data: https://parkinsonsdisease.net/answers/peripheral-neuropathy/

      I was wondering is anyone else with PD is experiencing this?

      Thanks

       

    • #16833
      Toni Shapiro
      Participant

      Yes, I have pins and needle feeling in my feet.  If I move them it stops soon after.

    • #16837
      Carol Rothfeld
      Participant

      I have neuropathy. It started years ago in my right foot. I now have it not only in both feet but in each leg going up to behind my knees. My pain management doctor says that Gabapentin or Lyrica may help. They haven’t helped me. It is a persistent tingling and numbness. I haven’t had the feeling like an “electric shock” for quite a while. I just live with it.

    • #16848
      Jean Mellano
      Participant

      Toni, Carol,  just living with the symptom looks like something we have to accept after we have tried meds, supplements, exercise etc… sigh

    • #16849
      Manuel Fernandez
      Participant

      I also have neuropathy. Mine started last year, which was my second PD year. It was localised to the middle point between the last two toes (4<sup>th</sup> and 5<sup>th</sup>, the smallest ones). My family doctor saw no association with my PD and sent me to see a neurologist different to the one that sees me for PD. The neurologist carried out an EMG (Electromyography) and the diagnosis was “discreet signs of pain on the peripheral motoneuron. Not recent and of radicular type at the EDB (extensor digitorum brevis: this is a muscle of the upper surface or dorsum of the foot)) and on the right tibial muscle). In human parlance: sensible damage on muscles of the lower leg, just below the knees, affecting capillary nerves below the toes.

      As the pains were easing out, I asked my family doctor not to give me any new medicine. I had fears that any new medicine would worsen the side effects of Sinemet. Indeed, the problem disappeared shortly afterwards.

      Now, two weeks ago the problem started again and it affected a bigger area: all inter-toe gaps and up on the instep. I saw my family doctor yesterday and he prescribed Gabapentin 300mg. (Mylan Generics). He checked that there would not be a clash with Sinemet. I got the medicine and on reading the first warning I decided not to take it. It said that in case of feeling a pain on the upper part of the stomach it was necessary to seek immediate medical attention because that could be a shock of acute pancreatitis. As I already had an episode of acute pancreatitis, I am well aware of the high risk of sudden death (3 out of 100 patients). So, the only relief I get is by immersing my feet in cold water for 5 or 10 minutes and that gives me a couple of hours of sound sleep; always with my feet uncovered. Last night I applied something simpler: I laid a piece of plastic besides my bed and placed a folded wet towel on top. When the pains waked me out I put my feet on the wet towel and folded it to cover also my instep. Thus, I avoided the nuisance of going to the bathroom to submerge my feet. This all is very painful affair.

    • #16852
      Jean Mellano
      Participant

      manuel, that sounds awful… i think it is good you have found a non drug alternative to give you some relief

    • #16856
      Christine
      Participant

      Yes! I have terrible foot pain, and not sure what to blame it on. I went to a podiatrist and ended up with orthotics which help but don’t solve the problem. Lately I’ve been wearing compression tube like socks that are meant for plantar fasciitis, they help somewhat. Also stretch my feet and toes out as much as possible because the toes on the left side are curling under and that affects my balance. I also get stabbing pain at night. So frustrating! I take Tylenol for the pain some nights.

    • #16860
      Jean Mellano
      Participant

      christine, have you thought about reflexology or foot massage?

    • #16864
      Christine
      Participant

      Reflexology hasn’t been on my radar at all. Maybe it should be. I’ve had Botox injections in my foot about 3 times in the past 2 years. That really helps the pain, but is such a painful process itself, at this point I can’t bear the thought of doing it again.

    • #16875
      laura seymour
      Participant

      I have only been diagnosed with PD for a few months.  I, too, experience that feeling of something between the base of my toes and the ball of my foot.  I thought that I had stepped on some tissue or tape, but there never was anything there.  I went to a podiatrist who determined (with xrays) that I have a neuroma which could be treated with shots of alcohol between my toes or surgery.  I opted out of both. This was before my diagnosis.  I have been taking Gabapentin for a few years and it has not had an effect on the neuroma, nor on my PD.  My problem now is that I get very cold in the early evening.  It gets better except or my feet and hands which remain cold and painful.  My PD neurologist knows about it and it may have led to my having a DAT scan to determine my diagnosis.

    • #16886
      Jean Mellano
      Participant

      Christine, reflexology, even if it doesnt help, it is always good to treat oneself and relax once in a while.

       

      Laura, i hope you find a solution for you foot pain.  i too have cold hands and feet, worse of a problem in NY winters..

    • #16898
      Larry Bolingbroke
      Participant

      Some of you may be suffering from dystonia which occurs in Parkinson’s patients.  I was diagnosed with both PD and dystonia by a neurologist at the same time 5 years ago.  The symptoms include painful curling of t he toes and difficulty standing or walking.  I get a botox  shot in my foot every 3 months which almost eliminates the problem.  Here is a link to more info.  Hope this helps!

      https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Movement-Symptoms/Dystonia

      Larry Bolingbroke

    • #16901
      Jean Mellano
      Participant

      Larry. Thanks so much for sharing this info…

    • #16911
      Paul D Lefebvre
      Participant

      Yes, yet another voice to the foot problem. I was diagnosed with PD in August 2012. I can’t recall when my foot neuropathy became a problem, but it seems to me it has been since the diagnosis and it is my sense that it is becoming progressively more intense. I do not claim this problem as painful; more as a nuisance. I have the constant sensation that the sole of my foot is made of thin leather or strong paper, but when I check it, it’s quite smooth. I believe I get more comfort being without socks. I also get the sensation that my shoe has a lot of sand in it, but no, it’s empty. This neuropathy affects both feet, but is most intense in the right one (my PD is mostly on my right side.) ~ Whether or not this is a symptom of PD I don’t know, but when I have occasion to consider my PD symptoms I just lump this one in with the rest. ~ It will probably not be a surprise to hear that I also experience dystonia with that right foot; this is much more of a nuisance, and more painful than the neuropathy. Because of my concern for the possibility of side effects I am not seeking medication for these two conditions; I’ll just continue with Sinemet for as long as that is effective.

    • #16912
      Anonymous
      Inactive

      I  have neuropathy pain in my feet from diabetes. My neurologist prescribed Nortriptyline which is effective at reducing pain.  If it returns, I use Topricin foot pain cream and a small foot massage ball. If it does not drive all the sensations and pain away, makes it bearable and capable of ignoring.

       

       

    • #16913
      J T
      Participant

      Me too. Numbness, curling toes, but the worst is the burning sensation on the ball of my left foot. My PD doc says it is PD, my podiatrist says no. It starts a couple of hours after I put on my shoes. Loose slippers help and I keep trying different shoes without success. Whatever it is it sucks.

    • #16920
      Karen
      Participant

      My husband was diagnosed with PD 3 years ago.  About a year ago, he started experiencing foot pain/burning and toe pain in both feet.  His toes don’t cramp, but rather they “splay” upward.  It can happen at any time … while sitting, walking, standing.  Because the muscles are in constant activation when it happens, it becomes very painful.  His neurologist couldn’t tie it with any of his medications or the timing of his Sinemet.  We happened to have some magnesium cream, which we use for random muscle aches or spasms.  I suggested that he try applying the cream on his feet.  He gets a lot of relief from the cream.  In fact, he will often apply it at night, then put on socks.  The movement and pain tend to subside, making it easier to fall asleep.  He also will apply it before we go for a walk or before he drives, if the movement is particularly troublesome.  His neurologist hadn’t ever heard about this remedy for toe dystonia, but was glad to know that it helps him.  The cream we buy on Amazon is Seven Minerals Magnesium Cocoa Butter Cream.  Note that a little goes a long way!

    • #16922
      Manuel Fernandez
      Participant

      I am gaining the impression that any cream helps. I had a problem with keratosis on my scalp and my dermatologist gave me an ointment to apply on any part of my head that would tend to get hard or irritated. I seemed to had felt a hard bit on my head so last night I put some of that medicine in my finger but I couldn’t find any hard bit spot on my head. As I was barefooted and had the finger with that ointment, I applied it between and below my toes  and the pain or burning disappeared for most of the night. It was one of my son’s who claimed this morning that all creams tend to evaporate at a very small rate and, in doing so, it absorbs heat from its surrounding area thus refreshing the part affected by the neuropathy. Just in case, the ointment is called Fucidin 20 mg/g cream.

    • #16930
      Jean Mellano
      Participant

      it seems we all are in search of relief from our symptoms and some of us have found something that makes the symptom more bearable.  i hope we all can learn something from each other, thanks to all for sharing…  we are not alone!

    • #16987
      Manuel Fernandez
      Participant

      I have now found out that indeed, peripheral neuropathy is one of the the most common adverse reactions reported with SINEMET and this is stated on the original report of the CENTER FOR DRUG EVALUATION AND RESEARCH, the basic report on which the FDA approval is based. The date of the document is December 2008. (https://www.accessdata.fda.gov/drugsatfda_docs/nda/2008/017555Orig1s069.pdf).  References also can be found to later research that has proved this. More and more I am getting convinced that maybe I should stop taking Sinemet. Does anybody knows of reliable and safer alternatives for Sinemet?

    • #17005
      Jean Mellano
      Participant

      Manuel, thank you for your research on this.  Unfortunately, carbidopa/levodopa (c/l) seems to be the drug of choice for Parkinson’s.  So lucky us gets to choose our poison; use c/l and chance getting peripheral neuropathy or dyskinesia or stop taking c/l and deal with our motor system symptoms.

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