Maybe something else?

I definitely have diabetes and PD, but I think something else is going on too. Every day I feel so weak and fatigued. I don't think it is the meds because I have been on diabetic meds for 15 years. And the exhaustion started way before taking any PD meds and the meds for my BP I have been on over a decade. I have had all my vitamins checked and metals in my blood. I take B12 shots, I take prescription potassium and Vit D. I'm only 68. I really think something else is going on but every time I bring it up at the doctors office I am told to exercise to build myself up. Believe me I keep trying but a day doesn't go by that I don't feel like I am going to collapse. Also I weigh 135 and am 5'2" so it is not my weight that is the problem. I use to be very energetic years ago. It all started around 2006. I know because I had to retire in 2007 because I just couldn't handle anything any more. I would have to go into the ladies room to rest. Before then my fellow workers had trouble keeping up with me. Could this be part of the PD?

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  • Theresa, I'm experiencing similar symptoms--extreme fatigue and weakness. In addition, the dizziness and lack of focus are worrisome. These symptoms are exacerbated by upper abdominal swelling--even after eating only a small amount of food. I am 72 (soon 73) and have refused PD meds. Three years ago I was, supposedly, in stellar health--but PD has been apparent (retrospectively) about 20-30 years! I've registered for the Mannitol trial and will start supplementing tomorrow. The Mannitol just arrived by FedEx.

    Thank you for sharing.

  • Good luck on the trial Syncletica . let us know how it goes

  • Why do you refuse to us PD meds. I am amazed that someone would refuse to take PD meds. Yet you will submit your self to a unproven med like Mannitol. If you had a blood infection would you refuse the med to help get rid of it.

    We have to stop demonizing Pd meds. They do their job and most people do great on them including myself.

    Please explain why you refuse them. Not just it is by choice but why you made the decision not to take them. I would truly like to understand.

    With respect

    Bailey

  • I was feeling very negative about having to take PD meds.

    Started oct 2016. Now on madopar 150mg 3 times a day.

    Most days now i forget i have PD. The meds have been wonderful. I agree with Bailey.

    All the best Theresa.

  • Bailey, I have witnessed two acquaintances who opted for PD meds and experienced horrors, i.e., nausea, hallucinations, et al. Both told me that they were sorry they ever started the meds as they did not (as we know) slow down the progression. Mannitol is not a drug and the studies by Israeli researchers are showing quite remarkable results. For those who choose to medicate with traditional PD meds and who also experience positive improvement symptomatically, I certainly understand the difficult factors to be weighed and wish them well. Big Pharma is not even looking at Mannitol as it would not be lucrative for them to do so.

  • FWIW, Personally very glad to be taking C/L . Much much better with it than without it. No adverse effects as far as I can tell.

  • Me too park_bear.

  • Do some research. It is a drug. All supplements are drugs.

    Mannitol

    Generic Name: mannitol (MAN-ih-tole)

    Brand Name: Osmitrol

    Mannitol is an osmotic diuretic. It works by increasing the amount of fluid excreted by the kidneys and helps the body to decrease pressure in the brain and eyes.

    drugs.com/cdi/mannitol.html

  • Concur, Bailey! However, the caveat is that some "supplements" are proven more toxic than others. It is essential that, whatever course one chooses, discernment leads to mitigation of the symptoms. I laud your commitment to follow the path most beneficial for you.

  • I guess it's a matter of finding what works for each person. You mentioned that azilect made you depressed for 9 years. Good reason to avoid that PD med for you.

  • your are correct but at lease try

  • I started. mannitole today. I hope it might help

    Julia

  • Can u send me info and/ or link to get in manmitol trial ..also on Amazon there are several powders ..which one did u get and is it recommended one tablespoon per day or one teaspoom twice a day? Thanks for guidance

  • Boyce, click on the following link. After registering, data will inform you about dose. I purchased the Bulk Mannitol on Amazon. I've decided to start it Jan 1st. I will start with 1 tsp. before breakfast and gradually increase per instructions at registration site.

    clinicrowd.info/

  • I have ordered some too but it was difficult to get (in Aus) and I have ended up only getting enough for 3 weeks initially. Hope that is long enough to start to work. I imagine it might take some time to work. Does anyone know?

    I still plan to take NAC and azilect though so I hope that they will all work together.

  • Any improvement with the mannitol?

  • I suspect your fatigue is directly related to PD Theresa. I dont have the overwhelming fatigue you describe but know others who do.

    "Fatigue affects about half of all PD patients and has a major impact on quality of life. Fatigue is the single most important reason cited for medical disability insurance claims by PD patients in the United States. PD patients suffer from both physical and mental fatigue...."

    researchgate.net/publicatio...'s_disease_patients

    researchgate.net/publicatio...

  • I agree and have suffered that fatigue at times. Switching to selegiline from Azilect may have helped.

  • Hi, have you had your thyroid checked? I did have a period of time when I felt just exhausted. Bought a little bottle of thyroid nascent iodine and on and off and taking few drops per day. It seems like it's been helping comma I'm not a speedy but I am feeling better with my tiredness.

  • Oh yes I forgot to mention I do have hypothyroidism also. I take l-thyroxin for it and my levels are checked every 3 months. I had a thyroid scan and there is no tumor or anything like that. I don't believe that is the cause of the fatigue.

  • Are you taking azilect? It helped me with fatigue.

    Also could you be depressed? Xmas can be a difficult time.

  • Yes on Azlect and no on depression. My depression went away once I started Sinemet.

  • Theresa, did you see my post "How do you know if it's Parkinson's Disease?" Maybe it could tell you something? It could be something else or in addition to PD?

  • Yes I did see your thread. I'm very certain I do have PD the meds are really keeping my symptoms at bay, but not the fatigue. I have so many things going on but the thought keeps crossing my mind that maybe there is something else causing the problem that I have not yet discovered.

  • Hopefully they don't find something else, PD is enough! Do you take Vit D3 and/or has your doctor checked it? Also, I take Emergen C for some pain & stiffness I had in my thighs about a year ago & the pain went away after about a month & it also gave me a bit more energy. Just some thoughts.

  • Yes I am on a subscription of Vit D. 50,000 units once a week and then if it drops below the normal range 50,000 units every day for two weeks. I have the Vit D checked every 3 months. This all started many years ago when my blood test showed Vit D at 7 whereas the normal range is 30-100. It has never gone above 40.

  • Yes I too, feel fatigue that I ignored for a long time. Goes with PD I think.

  • Do you exercise? I was very fatigued and hit the wall about 4 pm each day until I started meds and began Rock Steady Boxing. It has done wonders and such comraderie as just for Parkinson's. If you have a group near you, you must try it! Best to you.

  • That's what everyone says including my doctor and please believe me when I say I exercise as much as I am capable of. Which isn't very much. I've tried to do a little more each time but find the increase just makes me much worse to the point I need to spend the day in bed.

    I use to be so very active. I walked 4 miles each day and on weekend days sometimes I would do it twice (8 miles a day). I had two jobs -- one was a dog kennel that my husband and I built and the other was a Programmer for a corporation. I was constantly on the go. I was fit. I'm telling you this because if exercise is the panacea for PD as has been touted, then why the heck did I get it in the first place. It doesn't make sense to me.

  • Theresa, I, too, have wrestled with these same questions. I was a vegan/vegetarian for over 50 years. Exercise was foundational to my daily routine: adept yoga practitioner (before any one in the West heard of yoga!), marathon walker, weights... I have concluded that the etiology of PD is genetic. PD was named in 1817 but certainly was documented well before then. The toxic chemicals indicted now in the literature were not around at that time period. I've also queried to what extent emotional trauma is a factor that coincides with a genetic mutation. I experienced severe emotional trauma when a loved member of my family died suddenly soon after the death of my mother. I wrote at the time to a friend that "my brain suddenly feels paralyzed"!

  • Oh Syncletia you are truly on the same thought journey as I am. I have a first cousin that has PD and her father who was my mother's brother had PD, so I believe there is a genetic link....and I too believe my PD started progressing more rapidly after a very tromatic event. My younger son died in 2011 and I can't even tell the emotional pain I lived through. We were so very close and a day still doesn't go by that i don't grieve his loss. Months after that symptoms became more noticeable but the doctors all chalked it up to my emotional state. just last March I had another troma and the symptoms got much worse and by August I was finally diagnosed.

  • Theresa, I empathize with the severe emotional impact of losing a child. Within a few weeks of the events referenced, I noticed a very slight tremor in my right index finger and, simultaneously, a numbness in my right big toe. The first neurologist I consulted dismissed the presenting symptoms as "insignificant". I was willing to plummet into the abyss of denial, though research was confirming my suspicions. The second neurologist concurred with the first, i.e., "insignificant". The third neurologist diagnosed "mild, right-hemi Parkinson's". The fourth neuro ruled out MS and ALS and concluded it "appears to be PD". The fifth MDS concurred "appears to be PD". I have been informed that the word "appears" is used to avoid litigation as a diagnosis of PD is "speculative", i.e., no definitive test exists to conclusively confirm diagnosis. Further research confirmed that, not only is the diagnosis of PD "speculative" but that current treatment options are "speculative" as well. After the proverbial "honeymoon" period on traditional PD drugs, the side-effects become apparent. Then the dosage amount is increased, the administration times increased and additional drugs are prescribed to treat the side effects. I witnessed a friend submit herself to this pharmacological merry go round and have, therefore, chosen to avoid doing so. As Bailey noted every supplement is a drug (yes, even, the supposedly innocuous vitamin C!!!). Discernment is an individual matter after weighing the risks and benefits.

  • You make a good point about exercise. It is not a cure though but helps the body function as best as it can with pd. For some, exercise may be too difficult, for others it is not the same problem and may even slow the progress. However exercising doesn't seem to prevent pd so there are other forces at work (genetic predisposition?).

    Taking increased meds as time goes on is to be expected as the pd gets worse. Of course, there can be and often are side effects as time goes on but they give quality of life to many. I think there is a place for supplements too and if a person can live well withouts meds then why not?

  • I know this is not Parkinsons... Husband has Parkinsons. We both have Post Polio Syndrome as well. We had polio as children and recovered from paralysis mostly waist down fairly well and had no idea that PPS was going to happen. However, our fatigue comes mainly from thils... The polio virus killed nerves and those that did not die grew extra axonally sprouted roots that took over some of the orphaned muscle fibres and hence the more nerves connected for the muscle the more it could work. We were not aware that you only need 30% of muscles to work... but then that 30% needs a rest to recover. Normally one has 70% resting... Polio Survivors may have recovered say 60% and now are losing some... If we Pace and Rest Activities and allow those muscles to recover we can do the action again. There is no set time to do and rest it is individual for each of us and each limb....

    We use energy tokens to work it out. £10 a day and £70 a week and we take an average day and activities and work from there. I know that a day having to go to the hospital for an appointment is going to be a 13 token day so there is less the day before and for afterwards. As for each action.. for instance. If I sit and type at a computer screen then say half an hour for £1 of energy. But if I use my laptop on my lap with both arms supported on the arms of the chair and my feet up then I can get an hour or more out of the same amount of energy.

    I know of at least six polio survivors that have Parkinsons as well.... But also other neuromuscular conditions can cause similar problems with fatigue.

    Be interested to know if pacing and resting activites and using aids and assistive devices and asking folks to do the tough bits so that you dont WASTE energy doing stuff you dont have to and have energy for doing things you do.. helps.....

  • Sounds like an excellent management system. thank you for sharing this

    .

  • latest......they're trying stem cell treatment on ms patients...not unrelated condition..........after determining it was a auto-immune problem. they separate your own stem cells from your own blood and somehow they retrain your immune system to stop damaging your body. they had people in wheelchairs walking.....this is international research but I saw this on tv in uk experimental program. it's not due to malnutrition, anyways.

  • Sounds hopeful.

  • could be auto immune problem?

  • Theresa, I was just reading an article on the aarp.org site called, Nine medications that can cause chronic fatigue. We can change as we age and things that didn't bother us before can start bothering us and cause problems. It made me wonder if you are being affected by medication interaction or by one of your meds you have been taking for ages. These things are so frustrating and scary. You certainly have my sympathy and empathy. Yesterday I had one of those days where no matter what my meds didn't seem to kick in. Why?! I haven't a clue. I just hope it doesn't happen too often or, better yet, ever again! Too much to hope for....

  • I would be very interested in knowing what those 9 meds are. I am goingto check out that site.

  • Chronic fatigue syndrome (CFS), a specific asthenic condition, is identified in a half of patients with Parkinson's disease (PD). An aim of the study was to evaluate an effect of melatonin (melaxen) on the severity of CFS, affective disorders, quality of life and sleep disorders in 30 patients with early and late stages of PD. After treatment, there was a decrease by 21% (p<0,05) on the Parkinson fatigue scale. At the same time, the improvement of sleep, assessed by the PDSS, decrease in the state anxiety on the Spilberger's scale and improvement of quality of life on the PDQ-39 (p<0,05) were found. No significant differences in motor, cognitive autonomic disorders and depression level were noted compared to baseline. Therefore, melatonin, together with optimized antiparkinsonian treatment, can treat CFS, improve sleep and quality of life of PD patients.

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