I am curious if anyone has a cheery solution for abject fatigue. I’m finding it to be a potential terminal issue. I don’t see a way out. The more I try to exercise the worse it gets.
I’m currently on Rytary, klonazapam-dose hasn’t changed in 4 years- and levothyroxine. About a year ago started B1 and find it helps @2-3 gms . Also have a DBS 4 years duration... GIPD no tremors. DX in 2001, worked my own PT Clinic til 09. Any advice is appreciated.
Have your thyroid levels been checked recently? A possible cause to consider.
I have had blood work done and I’m doing great. I also have a BMI scale that has 8 different measures.... I am 60 rather than 71 yo.
I should clarify that last entry. The program equates my data at 60 , I am 71. The photo is of my family... my reason for existence.
Parkie:
He is taking levothyroxine. Your first two guesses as to why are free.
Hi etterus. I maybe wrong, and I often am, the fatigue is not due to a lack of energy! It is due to a shortage of dopamine, which is a neurotransmitter. It affects our motivation, which means we just don't feel like getting off our butts and doing something.
I have found that if I just get through the first five or ten minutes of an activity I need/want to do, then I overcome that lethargy and I am all systems go.
You may not have heard of me! I was diagnosed with Pd in 1992, although I have had Pd symptoms since 1963. I started doing 'Fast Walking' in 1994 and by 2002, I was not only a lot fitter I was also able to come off the Pd medication and live a 'normal' life again. I am now nearly 85 and still walk 7 Ks in an hour, 3 times a week.
You may not fancy fast walking three times a week for the rest of your life, but it costs nothing and I am the fittest man of my age in my retirement village and I am enjoying my life.
If you want to learn more then visit my website - reverseparkinsons.net and contact me. It COSTS NOTHING!
John,
You are an inspiration to me, so maybe you can advise. I was diagnosed 7 years ago and at that time, pledged to daily exercise. I used to run 3 miles a day, which I’d stopped about a year before diagnosis, in retrospect symptoms made it impossible to run. I cannot sustain movement without meds, so meds I’ve taken since diagnosis. I used to walk 50 minutes a day on the treadmill. Since reading your posts, I cut down to 3 times per week, either walking outside or on treadmill. (I also take yoga classes 4-6 times a week). I am one of those people who burns through dopamine when I exercise so find some days I can barely make it through 20 minutes on the treadmill (which is more strenuous for me than outdoor walking). I literally cannot keep moving. Any suggestions?
Hi PDGal. How much levodopa medication do you take a day?
Rytary (23.75/95 mg x 2) 4 x day
C/L (half 25/100) 2-3 x day (between Rytary doses for off periods)
Also Azilect (1 mg) and Neupro (4 mg) 1 x day
That is dyskinesia territory and needs to be rectified, if possible, as soon as you can. If you reduce the medication in order to get away from the dyskinesia you say you can't move. that is a problem because that will continue to get worse.
If you were able to get some meaningful walking in between the doses you might just start to improve.
Won't you please contact me via my website - reverseparkinsons.net - and it will be easier to discuss this.
I have done so.
John... I have been on this blog for 10 years now and we have engaged in both agreements and disagreements on several occasions. I am a big proponent of exercise of many types for everybody that intends to stay alive. I know that sometimes I feel better after I get started but that’s history for me currently.... I just feel like I’m beating a dead horse!
Sorry to hear that etterus. Won't you email me and let's see if we can do something about it. - reverseparkinsons.net. It won't cost you anything!
Amazing to say the least. My grand mother is 79 and she still tries to run some half marathons and 1-2 marathons every year because she like it and she always get the gold medal (she has almost no competition). It seems that "extreme drop-off" age for this type of run is somewhere around 80, even when she runs Boston or NYC.
JP is walking (roughly) a 14 minute mile pace. Outstanding for someone 85.
S
Thanks! It has come down a lot since the age of 64 when I was doing over 9 Ks in an hour. I was not the fastest person at Walk for LIFE. There were at least two women. one of them my age, who were considerably faster.
John:
IMO, dopamine is just one factor in the energy cycle (the production of energy is often referred to as metabolism) which takes place in every cell. When energy is required, walking, running, etc., dopamine (and related factors) don't necessarily flood every cell to increase the available mitochondria. The level of increase (the number or size or both) is critical because if nothing increases during that process, the body has very little energy = fatigue. And our inability to generate enough oxygen is also critical.
It isn't as simple as "dump more and more dopamine down your throat"...
Dopamine is just one variable within the neurotransmitter complex and within the "sum" of our human system. It doesn't control everything, far from it.
Beyond very short term needs for energy, the KREBS cycle dominates because it produces more lasting energy than any other pathway.
Agreed! IMO we don't need to take ANYTHING to overcome our problem, we just need DO FAST WALKING!
My, such a beautiful family! Thanks for sharing! With PD, I have found that fatigue is a problem for me, too. I have Anemia, so that just compounds the fatigue!
My hubby is extremely fatigued also. He sleeps for only an hour or so at a time. His quality of life is not good because of this. He has tried many prescription sleep med as well as natural sleep aids. He was diagnosed 4 years ago and this all started 3 years ago. Docs have no more suggestions. He take C/L 25/100 q4h, B1, magnesium. Poor guy is at wits end and feels doomed to live with constant fatigue. Praying for guidance and a cure ...
I used to suffer from incredible fatigue and it was pointed out to me that my Vitamin D was on the low side. After a week of taking a daily oral vitamin D spray the shackles just dropped away and I am now motivated again.
Good luck as fatigue is so depressing.....
Same with me. Blood test showed low D. Also when first diagnosed, extremely fatigued. Blood test showed extremely low B12. Had shots for 3 years and take orally daily now. Did your blood test check vitamin levels?
Also add I take sublingual or chewable B12 and D. My doctor advised as said swallowable vitamins are not fully digested and you don’t get full benefit.
Have you considered probiotics and your nutrition? PD is connected with your gut and poor digestion and hard exercise don't go well together. Best Kevin
Thanks to all. I’m willing to try D and B12.
Magnesium is a great complement to vitamin D: livescience.com/61866-magne...
The best forms of magnesium are Mg threonate, Mg glycinate, Mg malate and Mg chloride.
You can tailor the form of magnesium to your physiological needs:
@ etterus
If you have been taking the same dose of Klonopin for many years, it’s possible that your blood levels have actually increased because the body’s metabolism changes with age over time. Higher levels could certainly make you feel exhausted.
Maybe you could speak to your doc about very slowly dropping the dose just a bit at a time to get you down by a total of one half a milligram in four to six weeks time.
Not trying to tell you what to do but just pointing out that if you do decide to lower the dose, it needs to be done very slowly!
Good luck and hope you get some relief soon.
If your thyroid function tests - TSH, Free T4, T3 and thyroid antibodies are at optimal levels, the next step I would suggest to test for Vitamin B12- unfortunately there is no universal consensus on what is the optimal range of serum B12 and actually it may not reflect B12 level in body tissues. I would request testing for Methylmalonic Acid and Homocysteine which indirectly reflect on B12 levels in organs.
Also, here is a good article about potential problems with thyroid test reference range - "What if your TSH is normal and you are anything but!"
Have you been tested for sleep apnea? I used to literally fall asleep at my desk late in the morning after 9 hours of what I thought was a good nights sleep, but now that I’m getting “good quality sleep” I buzz along nicely until bedtime. Just a thought...
You have a beautiful family!
Hi there. My husband had severe fatigue, inertia, lethargy, what ever you want to call it) before he was diagnosed. He was being treated for depression. Then he was diagnosed with Lewy Body dementia (Parkinson’s Dementia). He was attending a Movement Disorder Clinic. One of the neurologists suggested trying the Neupro patch (rotigotine, a dopamine agonist). He’d seen it work. It took a few weeks, but it was amazing. He was back to normal and has been for 6 years. It’s now stopped working and we are trying at trial drug, which works with the levodopa supposedly. He’s been on levodopa all along, but it’s never worked as well as it should. Before diagnosis he was lying on the bed looking at the wall. I hope this is helpful. Good luck.
B1 is not the only substance that helps restore mitochondrial function.
Here is an excellent essay.
B12 patent : US Patent for Cyanocobalamin, methylcobalamin, and/or adenosylcobalamin to help maintain a pain-free head and pain-free body and provide defense against headaches and body pain.
Patent (Patent # 9,855,292 issued January 2, 2018).
[treating mitochondria].
- Justia Patents Search.
patents.justia.com/patent/9...
Asper:
"B1 is not the only substance that helps restore mitochondrial function."
You may want to re-think that comment, since your idea that it actually has been found to RESTORE mitochondrial functions across all gender and age cohorts is somewhat suspect, if not extremely debatable.
Your citation for B12 is a "patent" application, not a clinical trial result. Best not to quote patent applications since they are inherently biased. However, it is also important to remember that all B vitamins should function within their complex. By their nature, they are not "isolates". (contrary to most thinking)
S
Reading these posts leads me to believe that so many patients are totally dependent on medication and do no exercise at all.
because there is no medication that claims to reverse the symptoms of Pd, we have to understand that whatever we are putting into our mouths is NOT MAKING US BETTER! That means we are continuing to get worse and the closer we are getting to becoming bedridden.
Is this because those who only take medication don't believe that exercise is the only action we can take that stands any chance of making us better? If it is, then they are very wrong!
Is it possibly because they tell themselves they are unable to exercise? If so, I also think they are wrong, unless they have some other health problem that prevents them from exercising. We should all exercise; starting with a small amount and slowly building it up to at least one hour every second day.
Maybe it is because they don't like exercise? I cannot believe that anybody would prefer to go down that road to being bedridden, rather than doing some healthy exercise.
Come on everybody! Start doing fast walking, very slowly, and stand a very good chance of getting better! It is healthy and it will make you fitter, even if it does nothing for your Pd, which I very much doubt!
John. I do not always agree with you, but you often have some very simple yet powerful advice" and on this subject I agree 100%. BUT the quality an type of excercise is as important as the excercise itself. "Excercise is medicine" and should be taken daily. Not my quote by rather Soccrates, 2000 years ago!!! You would not forget your meds but people easily fall into apathy and forget excercise. I agree also about pills, People with Parkinson's have a bad habit of thinking that Parkinson is a disease and should be treated with drugs. in the four pillar approach being badopted by many countries. psycological, lifestyle and Excercise are essential. Read more at terapiaparkinson.it/en/park... as John would say it is free!!
Thanks once again for all of the responses...
As I think back to the origin of my current fatigue dilemma, I have concluded that the replacement of my DBS battery last spring is critical. I feel that I was coasting on a ever thinning layer of neuronal network that collapsed due to the weakening of the DBS battery, the anesthesia for the surgery, and the fact that I was slow to return to my previous activity level.
I was hoping that I would be able to pick up my trike riding, the foundation of my aerobics fitness program, during the warm weather. However I experienced increased orthostatic symptoms as well as pvc’s with subsequent cardio-testing. The good news is that I have not had any cardio degradation.
The bad news is that despite our optimistic results from neuroplastic phenomena, the fact remains... for the vast majority of us this is a progressive disease.
I am exhausted from posting this. It’s been a 35-40 minute operation for me!
Im just gonna throw this into the discussion.
Undenatured grass fed whey protein isolate once per day. Throw 5ml of creatine powder in there on days you work out if you have good kidneys .
Doctors best brand co q10 with pqq. One per day.
These will support your mitochondria and restore you from fatigue at the cellular level.
Try for one week and follow up to let me know how much better you feel.
Also, organic nutrition is a must. Your body will spend less energy getting rid of toxins so you'll have more energy for you ! Keep your sugar and carbohydrate intake to a minimum. Especially avoid wheat. Have a cup of green tea once in a while.
Good luck my friend and love to your beautiful family!
If you want a multinutrient tablet which also contains many other compounds thought to help PWP try Hardy’s daily essential nutrients. They are made in Canada and have been around 15 years and have successfully helped children with adhd and people with PSTD. My husband improved dramatically over 3 days when he started on them. He has backslidden over winter and I am thinking it is a seratonin/ melatonin issue with him so waiting to see if he comes right over summer in New Zealand.
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