Chronic Fatigue Syndrome (CFS) and Parkinson's

[ldq1997]

Is anyone else bothered by overwhelming exhaustion and a need to sleep?

[gettome]

Yes I have the same problem from time to time. What is CFS? I know I have PD.

GETTOME

[ldq1997 in reply to gettome]

CFS stands for Chronic Fatigue Syndrome. It means being overcome with overwhelming exhaustion and the need to sleep.

[shall1019]

I was diagnosed with chronic fatigue syndrome before I was told I had PD. It's total fatigue, Insomnia, aches - can't remember all the issues. It is like Lyme Disease or Fibermyalgia. I thought I had it 6-7 years ago.

[windwsprer in reply to shall1019]

Interesting. I've had what's called fibromyalgia since I was a kid. ME/CFS began suddenly in April 1986. I was flat down for 7 years with 3 more trying to relearn to read and write. With convulsions and other CNS manifestations, this was not just "we're all tired, what's so special about you?" (My sister living in another state had a gradual type resulting in the same thing - also for 7 years - who knew? neither of us was competent enough to make a phone call.) Anyway the intense pain and paresthesias began back then. The stiffness and inability to do my stretching routine, as well as, stumbling and falling began about 2003 with intermittent twitching of my thumb and an increase in fatigue. Diagnosed with PK in 2007.

[cntrydreamer]

I've been plagued by chronic fatigue since 2001. I've never been diagnosed with CFS but did finally get a diagnosis of PD in 2011. I was checked for MS, back in 2001 but until the tremors raised their ugly head in 2001 I had to just deal with things the best I could. Chronic pain has been my constant companion for the last 12 years as well. Funny thing is I can never sleep more than 3-4 hours and even then it's a restless sleep at night. Give me time to take a nap anytime during the day and I feel like it is a more restorative sleep.

[Norton1 in reply to cntrydreamer]

I believe that Parkinson's can also have as a symptom a problem with the Circadium Rythym, hence your restorative sleep in the daytime. We need to readjust our Circadium Rythym if we are to minimise the effect of PD early on after diagnosis. Too many of us try to medicate ourselves to overcome this problem.

Norton

[cntrydreamer]

oops, that was supposed to say the tremors started 10 years later, in 2011.

[Norton1]

Hello idq1997,

May I suggest you research NADH which is in all our cells, but decreases so as we get older. Read anything written by Birkmeyer who also writes about CFS. NADH is A nutrient.

Norton

[ldq1997 in reply to Norton1]

I recall answering this once, but apparently something happened to my answer. Maybe I said something which is not allowed on this board. I will try to answer again and see what happens. I have indeed researched and tried NADH. NADH is made from niacin, and some people, like me, get horrible gout from niacin and cannot take it. Therefore I cannot use NADH. I have also tried modafinil, but you may have read about the awful side effect in which your skin starts coming off in sheets. Therefore, I stopped using modafinil and will not use if any more.

[Norton1 in reply to ldq1997]

Thank you for your feedback idq1997. I have looked through the research results and not everyone benefits and of those who do some by only a few percentage points; I think that I am one of those who have gained in taking NADH in respect that I have a little more energy, say, 10%. Like you though I am basically against allopathic medications and will not touch Modafinal.

Norton

[Partner]

hello

My partner also has overwhelming need to sleep during the day. We are trying Bright Light Therapy to see the circadian (day/night) clock can be reset. The idea is to experiencie bright light in the morning -- there are lamps and also earplugs - really!

Partner

[Norton1 in reply to Partner]

Hello Partner

Will you please keep us informed if the light therapy successfully readjusts his/her Circadium Rythym ?

Regards

Norton

[Partner in reply to Norton1]

Yes of course - good or bad.

Partner

[Norton1 in reply to Partner]

Partner,

Thank you.

Norton

[PatV]

fatigue is a symptom of, and precursor to, PD, like constipation or loss of sense of smell

[Melodysam1890]

Chronic fatigue was my life for four years - I was diagnosed with PD in 2010 .. Regular exercise, water aerobics, and walking did nothing to alleviate the fatigue. My neurologist began Modafinil 200 mg 1/2 tablet twice daily & it's worked wonders. Sleep was also a big problem with hallucinations & short sleep cycles .. I began an all- natural sleep supplement (Alteril) with 2 tablets an hour before bedtime & my sleep is deeper & for longer periods.

[raveneaux]

I suffered with fatigue, falling asleep sitting up, etc. while I was on Neupro 2 mg. Several tries later, and I am on Sinemet 50/200. I haven't felt this well in a very long time. Check with the doctor to see if another medication might be better.

[quirkyme]

be aware that one of the symptoms of depression is over-sleeping. Also depression can manifest as muscle pain, lethargy, lack of initiative, tiredness, withdrawing.

I find when I take my husband out, he's brighter and more engaged. We make an effort to get out once a day, at least, but at the same time, not have him get overtired/or overstimulated.

[quirkyme]

it can be scary to read about depression but it's common for people with PD. It's also frustrating when we try to figure what med may be causing what side effect and when we should push ourselves and when we should rest.

Exercise is, of course, important for both conditions. In winter we use a light board and that helps for seasonal depression.

Here's NIH Depression entry.

nimh.nih.gov/health/topics/...

[stampcollector]

any brain disorders will give CFS symptoms. We just went away for a few hrs and my hubby came home and slept then for 3-4 hrs. Had supper and went for coffee in our condo then he is now back in bed for the night.

[gran5-]

I'll try to be brief...30+ years ago my accupuncturist told me I had Fibromyalgia, it made MDs laugh and tell me I needed to relax, and some tried to convince me to seek psychotherapy. Now it is an insurance re- immersive Dx. I am so lucky that I have several additional Dxes. All this to say that no one can give you a definitive answer. Frustrated? Sure. It makes me seek answers to the symptoms I experience and there I have some success. Other Parkies can validate my statement: every 'symptom' that lands on me, the MD says is PD. I hope this was coherent, the brain scramble I experience is PD !?!

[ldq1997]

They say there is no definitive test for PD so this must mean that there is always a question about our diagnosis. But I think we can all say for certain that we have a central nervous system issue. My doctor thinks most probably I have Parkinson's, but my symptoms could also be the residual effects of an old brain injury which can be seen on an MRI.