Leg pain can be significant and have many causes; some related to Parkinson’s disease, some that increase in frequency with age and others that are more common in both conditions. Here are just a few:
Pain associated with Parkinson’s
- Off related pain – diffuse aching and/or throbbing pain that increases at end of dopaminergic medicine dosing or when medication levels are low. Unlike joint pain, this pain is often located in the muscle such as the thigh or calf but not the knee of ankle. PD medications can often improve this pain.
- Restless leg syndrome – uncomfortable sensations most commonly felt in legs that is worse at night and while resting and relieved with movement. See related post on restless leg syndrome for more information.
- Dystonia-involuntary contraction of muscle. This can be common as a symptom of PD, an off related symptom or as a form of dyskinesia from medication. An example is early morning foot dystonia described as painful cramping of the toes and feet. Botulinum toxin (Botox, Myobloc) therapy can help
- Arthritis of the knee, hip or ankle typically causes pain in the join and not muscle. Although this is unrelated to PD, arthritic pain can worsen when the natural biomechanics of the joint is altered with PD rigidity, loss of strength and loss of flexible. Physical therapy and anti-inflammatory agents are an important treatment for this and the condition described next.
- Achilles tendonitis is pain located at the ankle and plantar faciitis is pain located under the sole of the foot. Both conditions can flare with a change in exercise routine, with improper stretching and secondary to the tightness of the ankle and foot often found in PD.
- Peripheral neuropathy is caused by nerve damage that begins in the feet. Associated symptoms are pain, burning, numbness and tingling. The most common causes are aging, diabetes, vitamin B12, deficiency, thyroid deficiency and blood protein disorders. this condition not only causes pain but also can worsen balance. Blood tests can help identify the cause of this problem.
- Radiculopathy or sciatic nerve compression can cause pain in the thigh, calf in foot depending on the nerves affected. Causes could include arthritis and disk disease of the spin and compression of the sciatic nerve in the buttock region due to muscle tightness,
- Spinal stenosis is a problem of narrowing of the spinal canal. Often associated with back pain and pain in both legs. this type of pain often improves when a person is bent forward.
- Leg swelling can occur with PD, medications and other medical conditions. Abrupt change in leg swelling associated with pain could be a sign of a blood clot requiring immediate medical attention. Lack of movement and dehydration can increase this risk in PD.
This information does not represent all types of pain that can occur. As always, be sure to talk with your healthcare provider if you are experiencing pain in your legs.
An abrupt change in PD symptoms may be caused by a problem other than PD. Treatment therefore may require a different approach then simply changing Parkinson’s medicines.
In general, Parkinson’s disease is a slowly changing condition, yet you may find that your symptoms change dramatically overnight. If your movement, thinking or cognitive function change dramatically and quickly it may be due to something other than a change in your Parkinson’s disease. The following information helps you and your health care provider find other causes for your recent change:
• A recent addition of Parkinson’s medicine or dose increase can cause confusion.
• Fall with head injury can worsen neurological function.
• Other medicines such as some medicines for Parkinson’s, sleep, emotions, bladder control, pain or muscle spasm can cause confusion.
• Stress. This can include may types of stress- emotional stress, physical stress (including physical pain), medical stress (such as a recent operation and recovery) and even lack of sleep.
• Medical problem. The added stress of another medical condition can significantly worsen Parkinson’s symptoms. Examples include:
- Bladder infection
- Heart or breathing problems
- Sleep apnea
- Other infection
These problems can be treatable and symptom change reversible. Talk to your provider to determine if more testing is needed if you have experienced a rapid change in symptoms.
The vitamin and supplement industry is a multibillion dollar business. If you search the internet, browse your pharmacy aisle or read a magazine you will discover many claims about a supplement treating a multitude of symptoms, cure disease, or increase vitality. Watch out for these claims, especially the wonder pill that treats so many problems that it sounds too good to be true- it most likely is. Is there true benefit or is it marketing hype? Ask you healthcare provider or nutritionist about the evidence if any that exist behind these claims. Here are some common claims or statements you may have heard.
So why do we take vitamins? When asked, most people say they are taking vitamins to stay healthy, ward off disease and colds and to make up for a healthy diet.
There is no data to support the claim that vitamin supplements will keep you healthy and in the absence of deficiency will not treat disease. Expecting your vitamin pill to take the place of a well balanced vitamin and nutrient rich diet is like trying to make a full course dinner by tossing together a few key ingredients. If health is your aim, remember diet, exercise, stress reduction, emotional and social health are the key ingredients. Nonetheless, there may be a place for vitamins such as B vitamins in people with stroke, vitamin D in MS and Parkinson’s and vitamin B12 and folate for people with cognitive disorders and depression. Ask your doctor if vitamins a right for you and be sure to read about the good and the bad…
It is just a vitamin so it can’t hurt me (or substitute it is just an herb or natural supplement). Yes it can! The following examples illustrate this point:
- Vitamin A, D, E and K are fat soluble vitamins. These vitamins are stored in our body’s fat cells and high doses can accumulate to toxic levels.
- Vitamin E is a powerful antioxidant, helping the body reduce damage caused by free radicals. Although the evidence is inconsistent, one met analysis (review of the effect based on examining outcomes of many studies) found higher rate of mortality from all causes in people on high dose vitamin E. High dose vitamin E has multiple toxic consequences. Miller 2005. Ann Intern Med. Jan 4 2005;142(1):37-46
- Over ingestion of vitamin D may be associated with calcification of blood vessels in elderly and African Americans.
- High dose preformed vitamin A, known as retinol (found in animal foods) can cause headache, seizures, muscle aches, osteoporosis, skin and stomach problems. Provitamin A such as beta carotene found in fruits and vegetables such as carrots is safer than preformed vitamin A so read your vitamin label carefully.
- Excessive doses of vitamin C are used by some during cold and flu season. Very high doses of vitamin C can cause kidney stones from uric acid, diarrhea and increase iron absorption (this is a problem if iron is stored in excess).
- Excessive iron can be deposited in our body’s tissues leading to problems liver, skin, joint and intestinal symptoms. Iron is used to treat certain types of anemia. Many postmenopausal women and men do not need iron so talk to your doctor about whether you need iron.
So should I take a multivitamin?
Few Americans are vitamin deficient. In part because the processed foods we buy off the shelf are fortified with vitamins and minerals. A multivitamin will never substitute for the health benefits of a balanced diet that includes 8-10 servings of fruits and vegetables, whole grains, vegetable protein, omega 3 fats such as in certain fish, and high fiber (20-30G). Turn to food and vitamins to be sure you get a variety of vitamins and minerals in your diet.
However, some people are at higher risk for deficiencies:
- Vegetarians- may be deficient in B12, iron, calcium depending on diet
- Intestinal Malabsorption problems such asCeliac,Sprue.
- Long-term users of stomach acid depleters ,
There is no simple answer as to whether a vitamin is needed for you. Talk with your doctor before choosing a vitamin. Specific questions to ask include:
- Do I need iron?
- Should I take a calcium supplement?
- What about vitamin D or B vitamins?
- What dose of vitamin E and A is safe for me?
- How much B vitamins, calcium and D should I take?
Steps you can take if you do take a vitamin
- Read the label on your vitamin bottle.
- Avoid mega-doses unless recommended by your doctor. This is especially true for vitamin E and A.
- Take iron only, ie. restless leg syndrome, premenopausal women on doctor’s advice
- Pay attention to how much calcium you are getting in your diet and vitamin. Does it add up to the recommended dose given you by your doctor (1000-1200mg is the average daily requirement for older adult needs).
- Look for 100% RDA of vitamin C, B12, folate,B2, B6, thiamin, niacin, A (preferable in provitamin beta-carotene form). Gender specific or other specialty vitamins may differ slightly but the true value of these costly formulas is unknown.
Chances are you will benefit from a physical therapy (PT) evaluation and treatment if you have movement symptoms associated with Parkinson’s disease or other brain condition. However PT does more than simply treat movement symptoms. The objectives of PT vary with individual needs but do include these general goals:
- Evaluate movement problems and recommend therapy early in disease before problems and bad habits occur
- Reduce symptoms of disease associated with imbalance, rigidity, slowness, involuntary movements
- Reduce or delay symptoms of disease progression through targeted exercise such as balance and falls
- Optimize independence
- Optimize your home exercise program with a focus on general health, stamina, disease symptoms and long-term compliance
- Evaluate and recommend specific braces, orthotics, and ambulatory assist devices such as canes and walkers
- Improve safety, enhance confidence and reduce fear of activity such as fear of falling
- Neuro re-education designed to combat the abnormal movement associated with physiologic brain changes of disease, programs such as ‘Big and Loud’
- Promote neuroplasticity or enhanced brain activity through movement
- Promote healthy lifestyle changes to improve activity levels, quality of life and well-being both now and long-term
What is most important is that you advocate for yourself and take a proactive stance by seeking out a therapist even before you have problems. Most people wait until symptoms are significant or cause serious problems such as falls, pain or joint disease.
Advocate for your care.
Ask your doctor of healthcare provider if you can have a referral to a rehabilitation specialist.
Use this checklist to see how rehabilitation and other specialists can be of help to you and as a guide for discussion with your doctor or therapist.
Download and complete your Comprehensive-Care-Worksheet.
It is important that your medical provider be aware that you have DBS since there are some procedures that can not be performed if you have DBS. Examples of procedures that are not safe to be performed with DBS are body MRI, certain types of cautery and diathermy (a form of ultrasound used in specific situations to speed tissue healing.) It is recommended that your doctor call Medtronic Inc. (current DBS manufacturer) clinician support services (800) 707-0933 before any procedure to review if there are any concerns or interactions with your device.
One way to alert clinicians that you have DBS in an emergency situation is to wear a medic alert bracelet. This bracelet can be inscribed with important information such as allergies and a statement that you have DBS. You can include the emergency clinician support phone number and warnings such as “MRI and diathermy contraindicated.”
Mammograms are often a concern because they are done close to the battery site. Mammograms can be performed as long as the technician avoids compression of the battery which is usually located just below the clavicle in the chest. It is important not to compress the battery or extension wires. Breast MRI can not be performed. Diagnostic ultrasound of suspicious breast lesions can usually be performed if needed; but once again the ultrasound probe should not be used over or directly adjacent to the battery. Your technician should call the Medtronic customer support number listed above for more specific guidance.
The following excerpt is from a question received by NWPF.
We were told by our neurologist that my husband should take carbidopa/Ldopa (Sinemet) every 5 hours and also told to take it with meals. What is the best way to time the dose of this medicine?
There is no standard way to take carbidopa/ldopa. Dosage truly depends on the person’s symptoms, stage of disease and side effects. The following situations describe some of the different ways that carbidopa/ldoap can be given:
- Without food. Protein does delay absorption of this medicine from the intestines. For this reason you sometimes hear the recommendation to avoid this medicine with food so it can be absorbed faster.
- With food. This is helpful if disease is mild, a person has no wearing off symptoms, or nausea is a problem. In this case, medicine is often taken with meals for convenience and to minimize side effect.
- Spread dose out during waking hours. To keep things easy, your doctor can simply tell you to spread out doses during the day (in your case every 5 hours.) This is especially helpful early in disease or if there is no wearing off, dyskinesia or side effect.
- Specific times given. Timing of doses is also tailored to the individual’s day and night. If a person wears off at end of dose, has dyskinesia or side effects then medicine is given at more specific times based on these symptoms.
The best thing to do is to talk to your Neurologist about the conflicting guidance you have been given so that you can decide together which one is best for your husband.
Cognitive changes associated with Parkinson’s are mostly a category of thinking skills called executive function. Although many people with Parkinson’s
experience some sort of cognitive change, dementia or signficant problem impacting daily life and function is less common – occurring in about 30%. The more common thinking abilities are:
- Speed of movement
- Word finding and naming problems
- Performing complex tasks or skills
- Abstract thinking abilities
- Visual-spatial skills
Behavioral problems that can be associated with cognitive problems include:
- Apathy or loss of motivation
Memory abilities with Parkinson’s may be less efficient, but are usually not affected as much as Alzheimer’s patients are affected. People affected by Parkinson’s usually benefit from reminders and memory prompts, but may recall moments or hours after it was needed.
Cognitive changes are treatable. It is important to remember that medicines can worsen confusion and cause hallucinations in people with cognitive problems. When this occurs, it is important to balance the medicines that are most effective for movement with those that have greater thinking related side effects. Amantadine, selegeline and dopaminergic agonists such as Mirapex (pramipexole), Requip (ropinirole), Neupro have a greater risk of associated i thinking problems and /or hallucinations.
Treatment of cognitive changes includes:
1. Review with your doctor all medicines that can impact thinking such including Parkinson’s medicines, pain medicines, muscle relaxants, anxiety and depression medicines to be sure that they are all needed, reduce or eliminate theones that are not.
2. Check for other medical problems that can worsen thinking problems including strokes, sleep apnea, thyroid problems, vitamin D and B12 deficiency, poor diabetic glucose control, heart problems, low blood pressure.
3. Memory enhancing medicine such as Exelon (rivastigmine) can be tried.
4. Stay mentally active
5. Be mentally engaged
6. Get more exercise especially higher intensity aerobic exercise if possible.
7. Eat healthy including foods high in omega 3s (fish oil), vitamin B6 and B12.
8. Reduce stress
9. Simplify life tasks
10. Challenge yourself – learn new things, explore new experiences
11. Stay socially active
12. Do what you love
Most important get the help and professional advice you need. See your doctor and consider a referral to a Neuropsychologist and/or Occupational therapist
A positive attitude and gratitude for that which adds meaning and value to life can help you deal with life’s set backs, frustrations and improve health related problems. Gratitude can even be found during and even increase in the setting of difficult times. Gratitude enhances positive thinking which can help us deal with health related problems. Gratitude can help us better manage stress which not only worsens how we feel with PD but is linked to health problems such as depression, anxiety, heart disease and cancer.
What is the take home message? Use these techniques to take a moment and reflect on what you are grateful for to improve your sense of well-being, mood, PD symptoms and perhaps general health.
- Tell yourself something you are grateful for, thankful of, or appreciative of each day.
- Take this exercise on step further by writing your thoughts of gratitude down in a book or journal.
- Share your thoughts of gratitude with you partner or someone special in your life.
- Take a moment out of each week to read your thoughts of gratefulness.
Preference for bedding and type of mattress differs from one person to the next. An old mattress can be uncomfortable, lose its support and contribute to back pain or sleeping problems. However, certain Parkinson’s related problems will influence what type is best for you. The following considerations can help you chose your mattress/bedding
- Avoid high bed frames/mattress sets as these may be harder to get in and out of bed
- A firmer mattress will make it easier to turn in bed. ‘Memory foam’ that molds to your body can make it harder to roll over and turn in bed.
- An adjustable bed that allows the head of bed to be elevated can help with getting out of bed, finding a comfortable position
- An adjustable bed that allows the foot of bed to be elevated can reduce leg swelling by elevating your feet
- Try silk or sateen sheets or bed-clothes to help reduce friction and improve movement such as the ease of turning over
- Ask for a referral to occupational therapy if you are having trouble getting in and out of bed or moving and turning in bed to see if there are aids that can make this easier for you
Let us know what type of mattress has worked for you.