It is extremely painful to have one little toe or worse all toes suddenly decide to have a mind of their own and begin to curl, twist and bend at their own free will. Believe me, I know. This type of pain can bring a grown man to their knees.
When I first began having symptoms of PD, I noticed that every time I arched my foot to put on my shoes especially if the shoes had a narrow circumference, the shaft was high (e.g. boots),my toes along with my entire foot would curl up into an extremely painful contorted mess that could only be relieved by stoking deeply for several minutes. At first I thought I had cramps due to potassium deficiency since I was on diuretics (water pills) for my blood pressure. But, since they were potassium sparing of course this was not the case. Since I love shoes, this little problem was turning into a huge problem since I could no longer wear most of my shoes. Each time I attempted to wear high heels even medium heels my toes would automatically curl down. Because of the exaggerated angle in which the foot would have to be positioned wearing these shoes not only was it difficult to put on but even more painful to wear often causing me to be off balance. Now, I was forced to make a drastic change to my wardrobe throwing away most of my shoes including all my favorites to prevent falling and pain.
For the first time in my life I was wearing tennis shoes all the time (extra wide) with little to no arch.
Although, cramping toes can be one of the initial presentation of Parkinson’s disease as it was for me it can also be a sign and symptom of many other possible conditions.
In fact, cramping toes usually are a sign that medications are causing side effects ( as I alluded before especially in the elderly many of whom take water pills for heart problems), not working very well, and a first sign of Diabetes and other neuropathies (loss of nerve endings). Yet, if you already have a neurologic illness such as PD or idiopathic dystonia, the presence of these are an indication of poor medication control.
What to do at first sign of cramping in toes/ legs /foot:
Go to PCP to make sure your electrolytes are okay like potassium, magnesium and calcium (have both your total calcium and ionized calcium).
1) Toes cramping can also be a sign of diabetes, as I stated earlier. So your doctor may have you undergo a blood sugar tests especially if older or have risk factors like family history or repeated use of steroids. Usually they will order a 3- hour glucose test but others prefer a 5- hour test. This requires you drinking a nasty sugary orange drink while fasting while you have your blood drawn at baseline then every 1/2 hour to an hour for the duration of test.
2) There is a condition known as painful legs moving toe syndrome which also can cause this problem. This extremely rare, usually in adults. Pain is that of nerve burning, searing. This is associated with writhing movement of one or more toes and can be in one foot or both. sometimes can have movement of toes without pain- “painless legs- moving toes”
3) this can also occur in dystonia syndromes – focal idiopathic or secondary dystonia as seen with PD and other neurological disorders (e.g. Cerebral palsy, DRD, parkinsonism).
If all blood test initially are normal and symptoms persist seek opinion of a Movement disorder specialist (MDS).
If symptoms are determined to be neurological and due to PD as were mine then starting treatment with dopamine agonists or levodopa will dissipate the pain and stop the involuntary contraction of your toes. No longer was I bound to wearing tennis shoes all the time! Too bad I had already thrown half of my shoe collection away.
Now, if are already a season PD patient and are now having this problem: note time of onset and duration along with relation to medication intake. Does is it commence at end of dose, at peak dose, or beginning of medication? This is crucial to help your MDS best adjust your medications to stop your symptoms. If adjusting meds do not help Botox and even DBS can be done.
As an aside: Sometimes NEUPRO can cause cramps when patch wears off or if it falls off. I have noticed that suddenly I start cramping so I look for my patch to find out it has slipped due to humidity and sure enough it has most of the time.
4) As I previously mentioned neuropathies can trigger these problems, make sure that if you are a PD person your doctor is checking your B12 and Vitamin D because these deficiency are not only common in Parkinson’s but can cause neuropathy.
Treatments of Curling Toes: will depend largely on the cause but there are some symptomatic treatments. Finding the etiology is key to prevention and successful treatment.
- Mustard- spoonful of mustard with water- carry some packets with you in case
- (sour/dill) Pickle juice- when I first started having symptoms I became like all my patients with jars full of dried pickles in the refrigerator.
- Tonic water (Gin & tonic maybe not so much) a glass or 2 a day-
- No quinine- no longer used because potential for heart problems
- B12 injections/ nasal spray/sublingual
- B1- thiamine 100mg tablets daily- not enough to take multivitamins ( better to take B complex vitamins but may still need to take extra)
- Neurontin ( or Lyrica)
- Dopamine medications
- Klonopin (other anxiolytics)
- Baclofen ( other centrally acting muscle relaxants)
- Botox injections for focal dystonia when meds not helping ( may also use other forms of botulinum e.g. disport, myobloc)
- Sugar control (diet, exercise and medications)
- Replace electrolytes- K, Mg, Ca
- Replace Vitamin D
- parathyroid/thyroid replacement
Great sources of Potassium:
- Avocados (also rich in Magnesium)
- Bananas ( Magnesium source as well)
Great sources rich in Magnesium:
- dark leafy greens ( also have lots of B12 vitamin)
- fish (mackerel)
- nuts and seeds -(pumpkin seeds)
- beans and lentils
- dark chocolate ( my favorite)
- non-fat yogurt
13 thoughts on “Tips to dealing with cramping toes: By Dr. De Leon”
Hi/ thank you for your article. My mother is 78 years old and was diagnosed several years ago with PD. For the last few months she has had her toes start bending & cramping almost daily. The only medication she is taking daily is called Rytary.
I wa t to help her and I’m not sure where to start. If you can shed some light I would be grateful.
I am so very sorry to hear his…since she is having dystonia it could be a number of things either she needs a higher dose or she is having motor fluctuations in which the cramping could be an off phenomena – need to document when its occurring? is there a pattern? related to taking medicine? talk to physician and discuss your findings depending the cause they may look at labs as well to rule out problems with electrolytes and other things then may treat with muscle relaxants, adjust rytary dose or add another pd med or even recommend botox…best of luck.
Hi Doctor D, (or is it d?)
I am a runner, 56M, who has been sidelined for a year with this symptom: after 5-10 minutes of exercise (running or cycling) the toes on my left (only) foot start to curl. With a great deal of mental “effort” (aka relaxing hard) I can uncurl them but they snap right back. So they’re not cramps of the usual sort. This foot has suffered from a bunion for my lifetime also, which has messed up the balance between the big toe and the others.
Could this be the nose of the PD camel poking its way into the tent? I understand that you are not diagnosing me, but you might say “yes, that’s very suggestive” or “no, PD rarely presents that way”. If it’s fuzzy well then it’s fuzzy.
I have seen my PCP twice, two Physical Therapists, a massage therapist (maybe the most useful) and will soon see a podiatrist. I have tried poking, prodding, stretching every direction and dimension known to physiology. The spiky ball. The foam roller. The roller stick. Bla bla.
Dear Andrew- i am sorry that you have been plagued with this problem – weather is the beginnings of Parkinson’s disease i cant be certain. however, if this occur every single time that you run or cycle and only in that foot it tells me it is most likely a action/task specific dystonia (focal) akin to writer’s cramp except in foot- the reason could be varied which will indicate the best course of treatment- so my suggestion would be to stop seeing all these other doctors and find a movement disorder specialist so you can get to the bottom of it and stop causing so much pain and frustration to your life. sometimes the fast and easiest solution/treatment for something like this is the use of botox injections which typically do the trick …but, the main thing is finding out why you are getting dystonia and go from there. best of luck …rest your foot for a while.
Thank you Doctor, for your reply. I do believe it’s not just the foot, it’s the whole leg. Here in Santa Barbara everybody and their uncle are sports therapists. I’ll find one.
I was diagnosed with PD 3/29/2015. I have just recently experienced my toes on my left foot starting to curl and it is painful and crippling. What should I do?
Dear carol, sorry about diagnosis…talk to your doctor to evaluate and rule out any metabolic abnormalities like potassium deficiency …but if all is ok most likely dystonia that requieres higher dose of anti parkinson meds…may even consider local Botox injections.best of luck
Hello Dr. D . I’ve had PD for well over 10 years now. I am a hwp female age 65 this week. I am awaiting surgery for a full knee replacement in the coming weeks. Since the pain and swelling in my knee is acute, my toes on the same leg, left, have been going crazy. Sometimes for only a few minutes, but today they remain curled like a fist and I can’t walk or bend that knee due to great pain.
I am confused not knowing if it’s due to PD or arthritis. I take quite a few meds for PD, along with B complex, calcium with D. Etc. Heat packs seem to be the answer but not totally.
What am I doing wrong?
I am so very sorry you are hurting…well if it’s arthritihs. Your X-rays or other image s like mri should be abnormal …if normal that mostlylikley due to pd…have you tried increased doses of Pd meds? Massages, Botox, baclofen may also help
As well as things like klonopin..best of luck. Also has an mri of your back been done an dor ncv to rule out radiculopathy
Dear Dr DeLeon, Thanks for you blog. I am trying to re-find the post where you discuss ruling out YOPD vs DRD. You had mentioned the club foot as a common symptom in DRD, I believe you said it has been linked to a specific gene abnormality.
I am a 46 yo female diagnosed with cervical dystonia 12 years ago. Currently I am treated with Xeomin injections and oral baclofen by my MDS at Barrows Neurological Institute. i have recently began to experience the foot symptoms that you described above. In reading your article I remembered that my brother, who does not have a dystonia diagnosis, had to wear braces on legs and shoes as an infant. My dad said he it was because his feet turned inward. I am wondering if I might have stumbled upon a genetic link to my “ideopathic” dystonia. Would you please tell me what specific gene abnormality you listed in your past article? Also, I wonder if I should call my doctor and ask him to rule out YOPD, order genetic testing, or trial some sinemet? Your thoughts would be appreciated. Thanks.
hope this helps. good luck and thank you for following my blog. keep me posted .happy memorial weekend!
My toes on my right foot have been curled for about 5 yrs. I’ve been to several foot Drs and they say I have hammer toes and surgery is the only option. But my neurologist Dr said it is not hammer toes but due to Parkinson. I’ve had boots shots and there is no change. I’m in pain everyday. My foot and ankle r also swollen.
i am so very sorry to hear this – i can imagine how painful it must be – since your neurologists thinks is pd i imagined she/he started you on dopamine meds? have they helped?