Parkinson’s Disease Community
muscle pain
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This patient support community is for discussions relating to Parkinson’s disease, anger, anxiety, depression, balance, facial stiffness, genetics, handwriting difficulties, speech movement difficulties, nutrition and diet, rigidity (stiffness), sexuality, swallowing difficulties, tremors (shaking), walk (shuffling), and work issues.

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muscle pain

I was diagnosed with PD at age 65 in 2003, my PD tremor effects only my right side, first leg (started off with a bang) then hand and arm six months later and has not changed much since first diagnosed, not on any PD meds yet. Clonazepam 3x1mg/day four years for essential tremor, Gabapentin 6x300mg/day 3 years for neuropathy in feet. These meds also stop my tremor and allow me to sleep. Do have difficulty moving in bed getting out of tub etc. Have gained over 20 lbs in last three yrs now 195. Recently visited top neurologist in Vancouver via referral because Sinemet has no effect on me. He told me that I have a tremor intensive version and that it progresses slower and that tremor like mine is very difficult to control, unfortunately we ran out of time and he is 800 miles from here so won't be seeing him again and was not able to discuss pain.
I have had lower back arthritis from wear and tear over past 25 yrs, used Arthrotec occasionally when bad and it helped. But over the past year and half the pain has become chronic, especially bad in am when getting out of bed, worse if have been sleeping on back which must do as sides get sore. Arthritis meds have no effect now, is more like muscle pain across lower back and around top of hips, is also worse when standing up from sitting for a while. Exercise or chores are now difficult without taking breaks. I recently tried Sinemet three 100/25 per day for one week bet it got worse. My ankles and feet swell up pretty badly over last year and seem to be worsening. Any help is appreciated.  
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Avatar_f_tn
Did yours start with essential tremor?? My father and his father both had parkinsons. I have had some essential tremor in both hands for awhile and am so afraid of parkinsons. I do not have any resting tremor. I also get some spasms in my hands and feet and some numb tingling feelings in hands and feet. I am post menopausal and attribute all this to that but do you think it could be PD?
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Avatar_m_tn
Hi... Thanks for comment. There is some speculation now that there is a correlation between ET and Parkinson's but it is very minimal and unproven. Did your father or grandfather have ET also known as familial tremor (runs in the family)? Does it interfere with your writing, handling a knife and fork, social activities, etc? If so you should talk to your doctor about a med to help control it, although there is nothing much that will do a great job. A good test for ET is to have a glass of red wine before a meal and see if it calms the tremor, if it does then you can be sure it is ET. I have had ET for 55 years and it has progressed very slowly. It is not considered a disabling disorder. There is no point in fretting about Parkinson's it will only create anxiety and could make the ET worse. Personally I don't think spasms or tingling in hands and feet has anything to do with PD, possibly some type of mild neuropathy. If you are very concerned you should ask your physician for a referral to a neurologist with movement disorder experience, they deal with ET and neuropathy as well and can in many cases detect the start of PD. You only get to see them once every six to nine months. There is a movement disorders clinic in Edmonton with three neuro's. There is ongoing research, new ideas and new meds for PD that may stop it from progressing in the near future. I know a lady has had it for twenty years and you would hardly know it. It effects everyone differently. Best wishes.
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Avatar_f_tn
Thank you for your comments, I am thinking I have excess calcium causing the spams and twitches, they are testing for that now. I wish more attention had been paid to PD as the drugs are all very old and new treatments are very necessary. It is really hard not to worry about PD when you have cared for somebody who had it. Father did not take his medications very regularily and I think really compromised his health because of it. He never admitted he had this disease even til he died. My spasms twitches etc are not in one area of my body but all over, I really do think it is some imbalance of minerals or something. Thanks again and good luck to you
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Avatar_f_tn
I have a question for you I wish I had asked my father, when you get your PD tremors are there any muscle sensations that go with it or just the shaking. Do you have  twitches or numb feelings or anything to go with it?? I should stop worrying as I have these sensations all over my body. Only thing that worries me is a few times when I wake in the morning I get numb along the back of my right hand through the wrist and the whole hand will rock side to side. I have had trouble with that hand almost non top with numbness and pulling feelings What are your thoughts and thanks in advance
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Avatar_m_tn
In my case and I suspect that in all cases of PD tremor: If after moving your hand or arm around then set your hand down on a table palm down and try to relax it you will notice no tremor for possibly up to 30 seconds then you will notice the muscles on the back of your hand start to move around or twitch, then the tremor (shaking) will start almost immediately. PD tremor is very difficult to control, the few meds that are available do not work well and usually have side effects that are worse than the tremor so you learn to live with it. I do not have any numb feeling other than neuropathy in my feet, which feels like wearing socks when I climb into bed and the soles of my feet get hot when wearing shoes. As for your twitching all over doesn't sound like a PD symptom. The numbness and tingling in your hand should be examined by a doctor, it doesn't sound like a PD symptom, possibly you are laying on that hand causing a loss of circulation or it may be due to repetitive type of work.Not taking PD meds will not hurt the disease as they are just helping the symptoms and making life easier. I think that there will be meds to slow down or even stop the progression in the near future. Keeping active is the key to helping live with PD. Remember that not everything that shakes is PD.
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Avatar_f_tn
Thank you for taking time to comment. That is not what I have, my muscles in the palms under my little finger tingle and go through the palm side of my wrist,. It is very intermittent. I have twitches in my left hand as well and spasms through the arches of both feet so thinking that is not localized to one limb or side I believe it is not that serious. I have been doing research and I think it is vitamin D toxicity which has all these symptoms and more. I had been taking quite large doses calcium with vitamin d to combat impending osteoporosis. I have high drug semsitivities. My blood calcium levels are too high too which would explain most of this. I am hoping that not taking anymore supplements or any diet with calcium and D are going to recitfy this.

Thank you so much for taking me seriously. I find the idea of being predisposed to PD absolutely devastating. My father and grandfather both had it but got it in their late sixties, I am in my early fifties. Out of a family of 9 my father was the only one to contract it. There are a couple of younger guys in our area with it but I know of very few females with it. I guess there would be worse things but after caring for father it makes one pretty scared. I hope your symptoms are very slow to progress and not cause you many problems
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