I am experiencing more and more pain mostly in my tremor arm. It is like being tortured alive and arm and hand is even tender to touch. I wake up 2 to 3 times a night ( even after taking a sedative which I hate to do but in desperation I resorted to this from getting 0 to 3 hours sleep a night with the tremor being so active ) with a throbbing in the palm of my hand which leads to increased tremor and unbearable pain all the way up my arm . I try to hold it back by clenching my fist but it doesn't last. Then my whole body starts buzzing and shoots of pain like I am being electrocuted to though my feet and hands. I break out in a sweat and have to run to the bathroom to run warm water over my tremor arm or get a hot water bottle and massage my arm and hand with oils. I have never heard of anyone else having this problem. I went to see my original Neuro a couple days ago and I was having a lot of anxiety and he ignored me talking about my pain...had a smirk on his face like he didn't believe me which made me a sobbing mess . All be had to offer was a prescription for clonazepam for my anxiety. Unfortunately my anxiety has been so horrible that I have used ativan fairly often and occasionally clonazapam which terrifies me as they are so addictive. I am so frustrated with both Neuros I have seen briefly who see me in anguish but refuse to address the source of my severe anxiety . I feel like they are saying I am causing my own symptoms. This Neuro even suddenly walked back his original diagnosis and now saying he didn't say it was Parkinson's..He said it "could be" which is a lie and he even put me on Parkinson's meds which I am still on. He said anxiety could bring on Parkinsonian symptoms which made made me extremely abused and not listened to as I had no anxiety whatsoever and was a very happy grandmother before the tremors and hot sweats appeared. I am supposed to get seat scan done in October but I feel like I am going downhill so fast and have lost my whole life ..I can barely make it through another day. I read about pwp living mostly a normal life but all I am doing is just trying to survive another day with such excruciating and emotionally draining symptoms. Even when I go for a walk my arm throbs and creates more pain. Is anyone out there experiencing this or am I am an anomomly ?.
Severe pain in tremor arm and hand - Cure Parkinson's
Severe pain in tremor arm and hand
can you see a different neurologist? Could this be related to the medications? Are you taking any supplements? So this is what I found after doing a search. Maybe your neurologist needs to see this. Would it be possible to see someone who could help you find a non-pharmaceutical method to help with anxiety? So many medications seem to have so many side effects so maybe there might be something that would be helpful that would not have so many associated hazards.
"Does Parkinson's cause pain in arm?
Radicular (shooting) pain This is felt as a sharp, often shock-like, shooting pain that travels down the arm or leg, and sometimes the fingers and toes too. Tingling and numbness in the toes and fingers is also common in people with Parkinson's."
parkinsons.org.uk/informati....
Could supplements provide some relief from anxiety and not have as many side effects?
jeffersonhealth.org/your-he...
Very good explanations of types of pain on that first website. Thank you for sharing.
Firstly this is a firing offense: "he ignored me talking about my pain...had a smirk on his face like he didn't believe me which made me a sobbing mess ." Do not let a jerk like this get you down and make you cry. If you cannot find a decent neurologist, see if you can work with your general practitioner on Parkinson's medications.
It seems to me that you have the Parkinson's symptom of dystonia - muscle tightness - which can indeed cause pain. If so the solution is proper Parkinson's medication. What is your Parkinson's medication regimen, and when does this pain occur in relation to the timing of your doses?
The pain can occur at any time. Its especially bad when My tremor increases which the Sinimet does not help. My dose is 25/ 100 Sinimet 3 to 4 times a day. My arm is showing atrophy too..can't exercise it because it would go into extreme pain again.
That's just terrible! Pain has been one of my main symptoms since the beginning of this unwanted affliction. I even went to the emergency room a few years ago because my hand hurts so much I couldn't bear it and I have had three children without any pain meds. All they did was pump me full of drugs until I was oh about to throw up. I agree that what you probably need to do is take more levodopa, give it a try. Anxiety and pain always accompany off times for me and there's nothing I more than anxiety when your own bed is not comfortable and safe feeling that's just horrible!If I think of anything useful I will share it here.. . you are in my prayers and thoughts.
Hi, sorry to hear you’re in such pain. I have nerve damage in my left foot due to a spinal block injection many years ago. I was prescribed Axsain (capsaicin) cream which helps to some extent, might be worth asking your GP. As to Clonazepam, I have been taking one to two 0.5mg at night to help with restless legs for several months now and no addiction, (I only take it if my legs are keeping me awake). I think short term the risk of addiction is very low and it may bring you some relief. Hope you find some solutions!
Best answer! IMO. I have bad pain in my right leg and foot with constant foot spasms and toe curling. I can take it during the day but can’t sleep through it. At night I am helped by a full dose of magnesium and a large dose of melatonin plus 2 Carbidopa -Levodopa 25/100. Plus magnesium cream on foot and hip. I get 6 hrs of sleep. I also walk 2 miles a day, and do exercise bike 30 minutes and Rock Steady boxing once or twice a week which helps me mentally. Also chewing gum several times per day to prevent choking due to vagal neuropathy. Trying to take it one day at a time, accepting it as my cross, offering it up to the dear lord. I’m no savior but it helps give meaning to this stinking disease. Prayers for you. This is real.
I envy you 6 hours of sleep!! Even with my meds I only manage about 4 then invariably need to get up and stretch out a bit (and pee!) then hopefully get back to sleep again. Chronic insomnia years before PD. I tried melatonin but didn’t work for me. How much magnesium do you take? You have a good exercise schedule, I do Pilates and tai chi but need to do more daily…..
How much melatonin did you take? It doesn’t work if dose it too low. But if you take too much there are side effects. .. I take 6 - 500 mcg capsules plus the magnesium is essential
I don’t remember the melatonin dosage but it was only 2 capsules and I tried it over 3 or 4 months. This was a few years ago. Thanks for the info, I might add in magnesium again.
magnesium. I take a full serving before bed. This is it. Source Naturals Magnesium Malate, Magnesium Malic Acid Supplement, Non GMO, 3750 MG Per Serving - 200 Capsules a.co/d/eW4Gomv
Thanks again, I’ll have a look at this.
That is a massive dose ! Is that even safe ? I only take 400 mg magnesium glycinate.
The actual magnesium content of that dosage is only 425 mg. Looks like a very inefficient way of getting magnesium.
the cramping pain could be too much levodopa. Or too little. It could be worth a try to decrease the last dose of the day at least and see if it is better or worse. How much levodopa are you on and what type?
Clonazapam is probably a good solution as it can help reduce rigidity so it’s worth a try. If you are scared of being addicted to it do you have a trusted person that can dole out the required amount if you think you might be tempted to increase the dose. Start on a lower dose than prescribed for a week and only slowly increase if necessary.
To be honest people are addicted to the levodopa medication too but if it is what is needed to have a better quality of life then does it really matter? They will be on that medication for life but the same can be said for food! The danger is you keep increasing it but if you don’t have access to more you can’t do that.
Don’t be offended by the neuro saying it is the anxiety exacerbating it. He is probably right. My husband gets very much worse anytime there is any stressful situation or things get too much.
I am on 25/100 ..1 tablet 3 to 4 times a day. I tried 1 1/2 tablets and didn't find a difference except maybe it lasts a bit longer. The Neuro actually didn't believe my pain and appeared like he thought I was over reacting because of anxiety. I know anxiety exacerbates things but to be not believed when you are suffering so much was is cruel.
As LAJ12345 suggested, it looks like you're getting a C/L overdose. Have you already thought of a reduction, especially given the gender inequality in PD?
I would try taking 1 tablet first thing in the morning then 1/2 tablet every 3 - 3 1/2 hours after that up to the same daily dose and see if that makes any difference. See if you can juggle tablets and meals so the tablets are midway between meals if you can.
Please buy DMSO gel at Tractor Supply mix with a little aloe vera gel, apply topically two to three times per day. This will relieve the pain. A book to read: Dmso: Nature's Healer. It is available on Amazon
I heard an expert of Parkinson’s on Peter attia s podcast that said most people with new onset Parkinson’s have a lot more anxiety than they had previously. The anxiety started long before the symptoms were bad enough to cause anxiety. She obviously thought anxiety was a symptom that most people with Parkinson’s have to one extent or another.
I have had an experience with neurology similar. It is frustrating that is anxiety, depression or some other psychological suffering is increasing someone’s suffering it means the neurologists work is through and they need not give it any further thought. It is especially a major problem if your symptoms and pain is a little atypical.
I hope you find some relief soon.
I found a video on YouTube about, thoracic outlet syndrome, put out by a guy called Alex Villalobos. If you can get YouTube this might be worth putting in the search and reading.... it sounds so much like what you're suffering.
I have recently experienced something very similar. To the extent that I was referred for a cervical MRI scan and have the follow up appointment next week. It should have been a month ago but my GP cancelled on the day. I didn't rebook sooner because we were travelling back to the UK for a wedding, and...
It had got better. Whilst I am cautious about definite answers with this maverick disease, it fits the pattern of a narrow medication window. Complicated by using experimental vCR gloves. It started due to a sudden decrease in medication when I stopped using the gloves and after I resumed using the gloves when I got a milder version and increased my CL it got worse. I now find there is a (fairly narrow) window to work in. Complicated by the progressive effect of the gloves and therefore a need for regular review
Further complicated by dyskinesias now being a first symptom of over medication, with the pain being kept to a tingling numbness in my wrist and forearm
Maybe
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