I suffer from periods of hypersensitivity which I read may be caused or magnified by PD. Every stimulus, thought, or effort is painful, and enhanced by the apparent hopelessness of my situation, and knowing that everything is probably going to get worse as the disease "progresses." I've doubled my lower body workout, although my upper body exercises remain at the same level.
It's kind of hellish, and I don't know what to do about it. My psychiatrist wants to put me on Abilify, but I already take something like 25 pills a day including another depressant, Bupropion, and I'm reluctant to take yet another powerful pill. Maybe I'm wrong about this, although I also don't like the fact that Abilify causes or worsens ED, which is a problem of mine already.
I've considered suicide, but the problem with that is that no one is certain about what happens after death, and many religions consider suicide a "sin" and although I consider myself an atheist, I can help but be influenced by this belief.
Anyone else suffer from both PD and hypersensitivity, and possibly have some suggestions?
Thanks
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Alock2020
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I was struck by your feeling of hopelessness....I was just diagnosed last month though I'm sure it has been around for some time. I felt desperate for information, you know, the hard and fast facts. They aren't there because we are all unique. When I hopped on this forum, someone quickly suggested I join the group sessions.
Here is the link and if not complete, I'm sure someone will post it properly:
us02web.zoom.us/j/833522248...
Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)
Sundays, 11 am – 12 PM-ish, US CDT.
What I found in these groups were the bravest and brightest of people....who have been dealing with PD for some time. The whole vibe is...how to slow the progression down...yes it progresses but there is no need to hop off the train now....people have this for 20 years and live to build a boat or take a trip. You are of much more value than that! I am 84, blind in one eye and working on saving the other. I agree with you about the Abilify and for the same reasons you gave. Every morning and evening I treat myself to a handful of pills accquired over the decades. My personal, no degree here, opinion is that you don't need another synthetic mask...you need to be around people who are doing all they can to deal with, delay and fight....with a positive approach. Doing what we can.
I don't have the answer for the afterlife because I have never talked to anyone who came back and gave me a literal description, but, I am a believer is something bigger than myself. As an avowed atheist....even you wonder. You wouldn't believe the number of atheists I've met in my years who when their numbers climb into the 80+, they begin to wonder. No answer here, food for thought. Please join us...no need to be anything but exactly who you are.💞 I'm not flirting, that is just my signature~!
Thank you for your pragmatic and sympathetic recommendations. I haven't used Zoom much, so I'm not sure that the link is complete. Would I use it to go to the group, about 10 minutes or so before it meets?
I usually sign on just about the and then somebody else pops on, it doesn't hurt to go a few minutes early but don't be concerned if you sit there looking at yourself for a while💕
Could you check my post below to Alock2020, I don't think the link posted properly, I copied and pasted...but you knew that🙄. UPRIGHT citizen that you are...could you do it right?💞
I grew up in church. Every time I hear or read about someone committing suicide and people comment "They are at peace" All I think about is them burning in hell. It's not the answer.
I have an adult autistic daughter to care for.
All I keep thinking about is will I be able to care for her 10 years from now
There is absolutely no scientific evidence that Hell exists, but unfortunately, humans can't be absolutely certain that it doesn't. Christianity has successfully exploited this uncertainty, because even though a person might not, on the whole, believe in Eternal Damnation , even a slight doubt about it is exploitable, since the consequence of not doing so is said to be infinitely painful.
Belief in Hell has proven to be a two-edged sword, however. Many people call themselves Christians, but the religion was divided between many sects, and historically many of them believe, or once believed, that they were the true Christians and the others were false and their followers were doomed and bound for hell. As a result, there were wars between Protestants and Catholics, between Lutherans and Calvinists, and between all three, as well as persecutions of newly formed sects and so-called heretics.
I consider Damnation Theology to be the worst and most psychologically damaging doctrine of Christianity, spiritually terrorizing its followers and anyone else exposed to the religion.
' Using the algorithm, we identified 2606 patients diagnosed with PD, 60 of them (2.3%) were also diagnosed with FM. Most of the patients were females (88.3%) and the mean age of FM diagnosis was 63.95 ± 12.27 years. These patients had a higher prevalence of depression, anxiety, and dementia. Of the patients diagnosed with PD + FM, 46 (76.7%) were diagnosed with FM after the diagnosis of PD. Patients with PD + FM used analgesics of distinct kinds in higher rates, as well as more anti-PD medications. We suggest that patients with PD + FM represent a distinct subgroup with a fibromyalgia-like syndrome associated with Parkinson’s disease (FLISPAD). Their PD is more treatment resistant, and they take more medications, both analgesics and anti-PD. '
Fibromyalgia has been described as being hypersensitive to multiple stimuli as discussed here:
' This study presents QST evidence that the hypersensitivity of FM patients is not limited to painful stimuli but also to innocuous stimuli like sound. Our results suggest that abnormal brain mechanisms may be responsible for the increased sensitivity of FM patients. '
You said the following :
' I suffer from periods of hypersensitivity which I read may be caused or magnified by PD. Every stimulus, thought, or effort is painful, and enhanced by the apparent hopelessness of my situation, and knowing that everything is probably going to get worse as the disease "progresses." '
Does this sound like you may also be a PD patient also suffering from fibromyalgia? If so this may be worth discussing with your doctor to potentially adjust your many medications toward more effective disease management.
I realize you are in a very difficult situation with your multiple symptoms which seem to be closer to the dual disease state mentioned above. I also realize the idea of adding more medications is a hard pill to swallow. Fibromyalgia can cause debilitating pain and hypersensitivity that can move around the body to different locations and that fact sometimes helps determine that fibromyalgia may be involved.
I have a suggestion that may offer you potential help without actually adding another oral medication. There is no guarantee that it will help, but may be worth testing to see if it can help you even marginally.
Previously I wrote about how melatonin lotion (ML) that my friends made themselves at home has helped many of them with pain management of various causes of pain, but one person specifically reported that ML significantly relieved their fibromyalgia pain better than her prescription medications for fibromyalgia and did so without the significant side effects that the fibromyalgia medications have caused her. Here is the link to the article I wrote about ML, the benefits my friends reported from using it regularly as well as how they made it.
Here is a relevant quote from the friend who was using the ML for fibromyalgia pain :
' So I tried the link you shared and they said that Melatonin powder is not allowed to be shipped to Canada plus many other countries. So I went ahead and used the capsules I had purchased. The additional ingredients in these capsules are gelatin, magnesium stearate, maltodextrin and microcrystaline cellulose. When I googled these ingredients I saw that they are also in skin care products so I decided to go ahead and make the melatonin lotion recipe with the capsules, to be clear the capsules have the powder in them. There were 90 capsules in the bottle which equaled 900mg of melatonin.
This is the recipe that I used which I adjusted down to work with 900mg of melatonin:
900mg melatonin (90-10mg capsules)
1.35 oz (40ml) gin
2.25 oz (66.5ml) lotion
I added the gin to the powder and it did not dissolve completely but it may have if I added more, I just assumed that the other ingredients perhaps did not dissolve in the gin. I then added the lotion and mixed it well. It is a bit grainy in texture but goes on smooth and absorbs great.
Now the good news, it works!!! I have fibromyalgia and I am always getting new pains and some go after a while and some stick around and are so bad I can't sleep. My newest pains were in my neck, shoulder, arm and hand and it was bad. I applied the lotion to my shoulder, neck and arm and when I woke up the next morning after sleeping the whole night! The pain was greatly reduced I couldn't believe it!
I am continuing to use it every night and just a touch during the day if I feel the need but my shoulder is 80% better, my arm and neck are being a bit more stubborn but at least 50% better and my hand is also 80% better. I have applied it to a sore bunion and that is pain free now!
I had started to use the magnesium oil in a spray bottle a while back with minimal help with pain but I continue to use it because I know it's good for me.
I also want to mention that I have tried all the prescriptions for Fibromyalgia non of which worked or worked enough to justify the side effects.
I do also take PEA400 (Palmitoylethanolamide) which has also helped me a fair amount and I would recommend to other Fibromyalgia sufferers.
The excellent results from using the melatonin lotion make me a little emotional because being in constant pain is hard on your spirit and I have finally found some relief and I can't thank you enough for sharing your knowledge with everyone! Thank you Art!
The description in the article itself that explains how to make ML is very easy and straightforward. If you decide to test ML, please let us know if it is helpful for you or not.
You will have to get your doctor's approval because ML does go systemic and may not be compatible with some of the medications you may be taking.
It is also worth mentioning that melatonin has shown in multiple studies to offer benefit for people with PD. Lastly, topically applied melatonin in research has shown to have longer lasting availability than oral melatonin. My friends have reported that for the first two weeks or so, the positive effects of ML seem to increase and then level out at about 3 weeks or so.
Thank you for commenting and providing all of that info on FM. I read an article on it, and don't think I have it, but I'll mention it to my neurologist.
Even if you don't have it or you have something similar, it may still be worth trying ML to see if it helps. In your situation, it seems like any help might be a very good thing and the human/PD studies do significantly confirm that melatonin is quite beneficial for people with PD. Also it is important to remember that while melatonin levels and its neuro protective effects decline with age, it is even more so in people with PD.
This may interest you as regards people with PD and the relationship of melatonin in such people :
Art, does gin have to be the solvent? Can rubbing alcohol be used instead? I have never bought alcoholic beverages and feel too awkward to do so now! But my HWP would like for me to make him some ML.
If you drank 6 ounces of gin, you'll get very drunk, but if you drank 6 ounces of rubbing alcohol you could get very dead. Isopropyl alcohol/rubbing alcohol is much more toxic.
' Ten healthy adult volunteers applied a commercially available isopropyl alcohol-containing hand rub to their hands every 10 min over a 4 h period. Blood isopropyl alcohol levels were measured at the beginning and end of the study. At the end of the study, measurable blood isopropyl alcohol levels (range 0.5–1.8 mg/l) were recorded in nine subjects. We confirmed that isopropyl alcohol could be absorbed through the intact skin of adult humans. '
The point being that gin which is derived from multiple botanicals is a much safer product for longer term topical application.
sorry to hear that you’re suffering with pain so much it’s definitely very, very debilitating. It’s always the thought of taking even more meds that puts you off seeking help from the medical professionals.
My HWP (9 +years) and myself with Arthritis in most joints, have taken PEA with Luteolin, for quite a few months now and have definitely noticed a reduction with pain.
We also take Magnesium and have used Mag oil as Chartist has posted above.
This has kept my severe psoriatic arthritis in remission for 16 years now with no arthritic joint pain. Boron can be used as a substitute for borax. I use the borax because it only costs about a dollar per year.
I find that i really have to work on my mental outlook. For me, thats a combination of The Work, Lester Levinson, A Course in Miracles, and affirmations. It’s hard not to succumb to the hell of PD. And speaking of hell, please read Proof of Heaven. My belief is that PD is mental. We believe a false belief and make it real. Oh yes, read, Fighting Parkinsons and winning by Howard Shifke. So I work on FAITH, “Feeling Alive in The Heart”. I hope this helps
I’ve found that we still were able to find joy in life until the advanced stages, which are very difficult. But there may be better treatments by then for you, so maybe try not to fixate on that and build the life you can now?
Hubby gets something a bit different … it’s always temporary though. It’s extreme sensitivity especially in the face. And he thinks he’s getting touched even if there’s nothing there. But it usually passes after a few hours.
Also things like melatonin and or ltheonine at night and sunlight in the day or yoga maybe could help with mood more gently than another antidepressant.
I have found the Zoom calls to be a real source of community and support. I have learned a lot from the group. The best part is now I don’t feel so alone. You’re not crazy. Your brain and body don’t feel normal. Some days are worse than others. I hope you see a better day.
Alock2020 I wish I had answers, sadly, I don’t. I do share your despair and feelings of hoplessness. I am weary of taking drugs that don’t work that well and weary of shiesters claiming they have found a cure if we take what they are selling, I am tired of hearing that future drugs will be taken to ‘enhance’ an existing drug, sick of hearing that a potential solution can take weeks to determine its efficacy. The worst is waking up in the morning, not knowing what Pd has planned for me that day. I don’t know what a good day is any more, it’s been so long since I had one .
My doctor feels my cd symptoms may be exacerbated by mood since my clinical test results do not map to how I feel. How is it possible to ever resolve the depression when we are constantly reminded (can’t put on seat belt, taking 10 minutes to get dressed, etc.) of the progressive and incurable disease we have.
Sorry for the rant, but this post inspired me to respond. We are not alone.
Hello Alok,I was diagnosed 6 years ago and the process / journey nearly crushed me too.
I'd be happy to chat online about things I found most helpful in restoring Joy.
The reality that no global neurologist has found a solution in 100 years of research reminds me how complex our biochemistry, elegant our mitochondria, and mind-blowing our ATP synthase are.
I am new to this site and not medically savie. I went through what you are going through now. I profess to be an atheist but that is not how I approach PD. Life is precious. You can find many avenues to come to grips with your situation. You found this site for a reason as did I. Hopelessness is not a reason to give up. I know because I have been there. Still am. I won't let desperation dictate how I feel and act. I am currently homebound since I refuse to relinquish control of my future. Find reasons not to give up. Be proactive. Find a path that lets you look beyond the obvious final answer. I have no support system but if you do, use it. Never ever take the easy way out.
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But my HWP would like for me to make him some ML.
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