Feet giving me terrible problems

I am having terrible trouble with my feet. I have continual spasm like tightening sensations and night time is a nightmare. My left foot in particular feels like a ton weight and is quite numb. I find it impossible to get comfortable in bed, I continually twist and turn all night and sleep eludes me. I initially thought I might have neuropathy but neurologist diagnosed PD three weeks ago. I was thinking the Madopar might lessen the problem but so far no such luck, My left foot as I said feels like a ton weight and is freezing cold in the morning. I cannot really go on like this for much longer. Anybody out there with similar problem? Even as I write this my foot feels like it is in a clamp. Is this common in PD? Will Madopar when I reach therapeutic dosage have any effect? I really need some relief from this torture. Thanks in advance for any replies.

Hello boomerang,

You’re bound to be worried and anxious and I really feel your distress.

I think that one of the things that I have learnt during this last few years since my diagnosis is to try to accept what comes. There is no explanation as to why things are sometimes not so bad, and at others are dreadful. There will be smooths as well as roughs. If it’s any consolation, most of us have been there. When you do get relief, as I’m sure you will, it will be marvellous.

I know it’s easy to say it, but try not to let your symptoms dominate your thoughts all the time. Please don’t think me flippant for saying this. I fully appreciate your frustration and anxiety. If your first medications don’t give the results you hoped for, there are plenty more to try (as the Parkinson’s nurse said to me just yesterday).

My own strategy for taking my mind off nightime challanges it to imagine that I am coping brilliantly with an out-of-the-blue Ofsted inspection and teaching a fantastic lesson. (I am a well-retired teacher, but the thought of Ofsted still is the stuff of nightmares.)

Please try not to worry so much. You will be OK.

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Thanks for your response. Funny enough I just retired from teaching after 31 years in 2018. I had great plans for my retirement, did manage to visit Croatia, Italy and US before Covid so I should be grateful. I admire your optimism Re your illness. I am still feeling a bit raw about the diagnosis but hopefully in time I will be more upbeat. Thanks again for your encouraging words.

Hi both,

I still teach and not sure what I dread more Ofsted or my PD! I used to get a lot of cramps in my feet, especially at night. The pain used to wake me up, it was so severe. I started to do Tai Chi exercises off of Youtube; particularly exercising before bed. It is a good way to relax down. I rarely get cramps now. It may help you.

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As a previous reply mentioned I agree that trying not to think about your Parkinson’s constantly is a good idea not flippant at all in my opinion.but you have just been diagnosed so you are going to be thinking about it a lot… For me the beginning of the disease 10 years ago it’s probably worse than now overall. I don’t have the terror of an impending OFSTED inspection but I know a lot of teachers and recognise the syndrome.
Joking apart I have had quite a lot of trouble with my toes feet and lower leg calves to be precise. It is quite difficult to pick apart the different things that are going on but possibly the toes going into spasm is Dystonia(I get that occasionally where my big toe bends over Of it’s own accord and won’t move back till I relax a bit…but I also get numb feet and painful calves. I think PD is to blame For these symptoms but I also think that they are exacerbated by stress… And my guess is you are stressed. What has helped me is talking to a therapist about it, massaging with oil
The painful foot and a Madopar 100 prolonged release taken at bedtime As levodopa seems to help too…the levodopa lasts about 6 hours… so u get to sleep which is vvimportant, imho. Once you find the right level and type of meds that
work for you and once you get used to having pd …then life should improve I think.
Andy aka ojalahey

Hi, yeah I’ve been going through the same dystonia torture for about a month it started in my left knee and affected my lower left leg, it feels like all my tendons and muscles in my left leg have been ripped to shreds and the skin has been dragged across hot coals. I have numbness in my leg and feet. I’m under the physio & neurology team and having numerous tests. I was diagnosed with onset PD 11 years ago and had DBS in 2017 which helped no end. I’m also having weakness in both legs and frequently shuffle along. Just another chapter in the PD journey I guess?