Dystonia in calf and foot

[Collywobble]

Anyone had experience of terrible pain in calf and toe curling? My husband’s new neurologist is saying that because his PD meds (sinemet and Requip) are too strong and so is cutting them down. However he is also suffering with extreme fatigue and finds it hard to find the energy to do anything. His previous consultant had said he needed to increase his meds as he wasn’t getting enough dopamine! Very confusing. Added to this, he recently suffered from Ventricular tachycardia/ bradycardia caused possibly by the meds as there is structurally nothing wrong with his heart. He has now been fitted with a pacemaker which he had hoped would help relieve the extreme fatigue. Sadly, whilst it has helped with the arythmias, he is still exhausted all the time.
He was diagnosed in 2015 and was tremor dominant which didn’t bother him. He has no stiffness or freezing. He was prescribed Neupro patches in 2017 which helped with RLS but sadly had to change to Ropinerole as the skin reaction was extreme (like acid burns) He started on Sinemet in 2017. Extremely confused as he is prescribed beta blockers an Amiodarone by heart consultant to lower BP but the has to take Fludrocortisone to raise it because of Postural hypotension caused by PD meds. Any advice would be gratefully received.

[Reah]

Hi @Collywobble,

Welcome back to the forum,

It sounds like you husband has had quite a confusing journey with his Parkinson’s medication and I’m truly sorry to hear about the Ventricular tachycardia/ bradycardia that he suffered. The progression of his symptoms must be incredibly hard for you both.

Parkinson’s can cause problems with your feet and in particular, people with Parkinson’s can sometimes experience foot dystonia like your husband. I would encourage you to visit a podiatrist or a chiropodist for advice – there is no difference between them. However, you may want to first visit the Parkinson’s UK website for more information on this here: https://www.parkinsons.org.uk/information-and-support/foot-care

Members of the community have already shared their experiences with managing foot dystonia and I have listed a few threads that you may find helpful:

Curled Toes

I have "curling toes" on what I call my PD side. I can only uncurl them manually. I remember mentioning this during an A&E exam pre PD dx. Not a lot of notice was taken. And consultants have never mentioned let alone looked at toes. Perhaps toes are not considered important? Mine are to me.

Madopar

Hello Polly M After a disastrous time on Mirapexin I was put on Madopar last year(dx Sep 2010)and have been on 25/100 x 3 daily since last october. Has helped with walking, now walk well without shuffle, balance has improved and freezing stopped. However still have fatigue, although interspersed with more energy , and anxiety whch I m addressing with Cognitive Behavioural Therapy. Also still have tremor in legs. To be honest still not sure if I m under medicated or whether this is an acceptable…

Foot pain when walking

hi christo,i also have dystonia,and it not very nice at all,symtoms;there is many different types of dystonia,which symtoms are; muscle spasms,limbs twist in wards,body jerks,in different parts of the bodys.but with foot dystonia there is a painful muscle contraction in the foot which causes twistern in the foot.it is caused by incorrect messages from the brian to the muscles. there is no cure for it unforunally, but people with it can be controled with treatment pain control.

For more information and support, please give our helpline a call and one of our advisers would love to help you.

Best wishes,
Reah

[juju]

Hi I had a terrible time with fludrocortisone. It lowered my blood pressure to dangerous lows and I was fainting and falling. I came off them gradually myself and my the blood pressure, whilst is still on the low side, the dizziness and gaining spells have stopped.
The Parkinson’s nurse on this site was very helpful, why not give them a call and get some advice.

[Janny]

Hi Collywobble
I suffered greatly from my toes curling on my parky side which is the right side…eventually my PD nurse put me to a Doctor who specialised in feet and at the end of the day it was decided that I get Botox injections into my foot every 3-4 months in my case. It’s worked and I didn’t get any toe curling again in fact the last time I saw her she decided after a year of an injection in the sole of my foot (which by the way is extremely uncomfortable but the outcome far exceeds the few seconds of pain) that I should miss that injection for this quarter and still no toe curling in my right foot, however things have progressed to my left side and not only do my toes curl under but my whole foot turns inwards which upset me so very much the first couple of times but the foot Doctor as I call her said she would be able to help with this as well but is leaving it till I see my new neurologist next week. I’m sorry that your husband is going through this but please get him to see about Botox injections…I know because it worked for me it may not work the same for everyone else but it’s worth giving it a try. I hope this helps you and especially your husband and anyone else reading this.

Kind Regards