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