Hello All,

It's me again - a person with early onset LBD....I have been experiencing increasing muscle spasms in my hands, feet, legs and back...sometimes so bad they wake me up at night moaning or I cry in pain....I have also been having experiences where my hands or feet "freeze" into some contorted position that is incredibly painful that I cannot relieve by stretching or ways that used to work.....is this part of Lewy?

These freezes pass after 15-30 minutes but I have to try to keep moving the hand or foot even tho it's incredibly painful.....I have tried stretching, strengthening, potassium vitamins, tons of water, gatorade, massage and I am at a loss....I used to be a sort of athlete and could always stretch out a muscle spasm - those stretches do not help and sometimes seem to make things worse if it's a freeze up.....

I have flexiril (which I know I really should not use with aricept) and I have zanaflex. The flexiril seems to help the pain during sleep - not sure if it doesn't set up another cycle of problems though and the zanaflex makes my vertigo _really_ bad and my ears ring....which often leads to nausea.....Can anyone tell me what they have found that might help this symptom if it is a symptom?

The aricept is working wonders for me....I have been on 10 mg for about 3-4 weeks now and I am actually able to work some again and more than that I feel like I am again somewhat present in my mind and body and that I was somewhat lost before. I hope that may offer some hope to others who might be considering aricept or similar meds for themselves or their loved ones.....I am still having some side effects but it's worth it all to me to feel like me again (most of the time - still have the mood swings, some sundowning sort of moods and severe fatigue) but I am so grateful for this improvement...I was sure I would have to quit my part-time job that I have been doing from home for the last 2 years by july, but now I am thinking I might be able to keep going awhile longer.....mostly I am grateful for each day that I am feeling better one day at a time....next month the doctor will add namenda....

I keep you all in my prayers....these muscle freezes scare me since they just started in February....is this Lewy and anyone have suggestions for what might help or has helped your loved ones??

Thank you all so much for all you do,
Tonya

Yes, Tonya, muscle freezes are very common and represent the 'Parkinson's' side of Lewy. My husband has been taking Stalevo or Sinemet [both carbidopa/levodopa compounds] for years which helps a lot. Also with the pain, which seems to be related to stiffness, although a few years ago he was bothered by persistent left thigh pain for which two neurologist, a neurosurgeon and an orthopedic surgeon failed to find pathology in MRI and X-rays of his hip and lower back, not even arthritis. So his neuro concluded it was stiffness causing the pain. It seemed to go away on its own.

The only thing that worked for my dad was when they put him in a hot whirlpool bath. No meds ever helped unfortunately. I hope you find something that works. Lynn

I am SO glad this drug is working for you. If you need to start another drug for the spasms maybe the namenda will be postponed. But hang in there, one symptom at a time! You want to be sure you know how well one drug is doing before you confuse issues with another drug. I am sure you must be eager to get all the drugs in place and to experience as much improvement as possible. Since each person's reactions are unique it has to be a slow process to come up with each person's ideal combination. Slow, and very worthwhile!

I am a believer in Massage Therapy, I really think it helped my husband a great deal with stiffness and pain. I hope you will consider this!

Good Luck and I hope you can get some relief!

Irene, I agree, massage seems to help Frank, it's also a workout for us because we have to move him from side to side to back and it's dead weight. Frank goes every other week but I'm considering having him go weekly.
Gerry

I think massage therapy is fabulous and suggested that to my dad. This is when I found out that any touching was hurting him a lot. I thought it would be a great idea for him, but alas, his reaction was "NO!" I'm glad it's worked for many of you - feels good, gets the circulation going. Think I'll go schedule one for me!

Tonya,

I am in my third week of Aricept…

two weeks at 15mg….then I started saturday on my third week and up dose to 20mg…

could be an improvement in cognitive stuff…I have been typing a lot more than I have in a while…

side effects are real enough….GI issues have subsided…a little nausea and vertigo left…

muscle cramps have been just mild…and they have subsided….I mostly had them on my left side….foot, leg, arm…corosponding with one of my numbness zones…

I haven't had a really bad cramp in months….

I am not taking any supplements….but, I eat multiple bannanas daily….peel and eat…and make fruit and combo fruit/veggie smoothies….in emulsifier…I buy a lot of scratch and dent bananas at reduced price…?

hope it eases up for you...

Tonya, so sorry to hear about the pain and cramping. I, too, believe in massage therapy. I can't remember if you live alone or not?? Perhaps if you have someone in your household who could help you 'rub out' the spasms it may subside sooner?
I have discussed with others on this forum that I do not know if my husband feels pain when his toes or fingers curl into a spasm but if yours are so intensely painful I am pretty sure he must feel it. Let us know if you find relief, take care, Sher

It's somewhat unusual to be started on that high a dose and even more unusual to be increasing the dosage that quickly. Perhaps its because of your relatively young age. Glad you're not having worse side effects.

Thanks Everyone! I really do appreciate all of your suggestions....I am hesitant to start and PD type meds since they anti-cholinergic and if I have to deal with the muscle spasms to keep my mind/cognition as well as possible I am willing to do that....Sometimes the massages help adn sometimes I have more pain afterwards...just depends...I have a jetted tub at home but actually that hurts me too - but a hot bath without the jets might be a better option - Thank you all for your suggestions and for sharing your experiences.....
Best wishes,
Tonya

Sher,
I wanted to tell you that my "freezes" are not curling up of the hands and feet but rather the opposite - it's almost like my fingers and toes are hyperextended and contorted when this happens - I wanted to let you know it was different than curling up in hopes that Ken might not being feeling the kind of pain I described.....You are all in my thoughts and prayers.....
Tonya