Fatigue

[Suzzi]

Does anyone else have really bad fatigue?Also a burning like feeling in upper legs where you just can not walk anymore?Hubby bothered by these symptoms,the walking seems to be getting much harder for him?Does the medication cause this?Or Parkinson's?

[Beckey]

YES to both. Makes exercise a real challenge. Sometimes it makes standing up a real challenge. 

[Suzzi in reply to Beckey]

thank you

[silvestrov]

Low Dose Naltrexone (LDN) has been tested with Parkinson's patients and does decrease fatigue.  LDN is taken at bedtime starting at 1 mg and eventually raised to 4.5 mg.  It is an opoid antagonist which, at full dose, 50 mg, is used for opoid dependence.

At the lower dose it has been tested against diseases like Crohn's, fibromyalgia, MS....and Parkinson's.

Here are several articles about LDN/Chronic Fatigue & fibromyalgia: 

healthrising.org/blog/2013/...

LDN/Parkinson's: sciencedirect.com/science/a...

Hope this helps.

[enjoysalud in reply to silvestrov]

Thank you!!  I always appreciate your postings because you usually attach supporting documentation.

[silvestrov in reply to enjoysalud]

My pleasure and I hope LDN works for you (if you try it).  LDN has to be produced through a compounding pharmacy and it costs about 20-50 dollars a month.  My father tried LDN and it worked fine and he showed improvement.  LDN can be purchased without a doctors prescription through the following website:

buyldn.com/

While on LDN you cannot be on opoid pain killers because LDN is an opoid antagonist:

Contraindications

Naltrexone hydrochloride is contraindicated in:

1.  Patients receiving opioid analgesics. 

2.

 Patients currently dependent on opioids, including those currently maintained on opiate agonists (e.g., methadone) or partial agonists (e.g., buprenorphine). 

3.

 Patients in acute opioid withdrawal (see WARNINGS). 

4.

 Any individual who has failed the naloxone challenge test or who has a positive urine screen for opioids. 

5.

 Any individual with a history of sensitivity to Naltrexone hydrochloride or any other components of this product. It is not known if there is any cross-sensitivity with naloxone or the phenanthrene containing opioids.

 Rich

PS. Naloxone is used for drug OD whilst naltrexone is used for dependence - they have common chemical properties, and  naloxone has been shown to be a possible therapy for PD:

ncbi.nlm.nih.gov/pubmed/190...

[enjoysalud in reply to silvestrov]

Thank you for your prompt reply with information!

[Beckey in reply to silvestrov]

Prescription or OTC?

[silvestrov in reply to Beckey]

Normally prescription but if you order directly through the above link (from Israel I think), no prescription.

[McPam]

I have had the fatigue forever it seems and my   legs have started togged really tired and heavy, back aches...meds have been the same for a year or so...the PD is progressing.  The euro says he can not increase my meds due to my low blood pressure...so I have to hang in there and in a few aware probably get DBS.

[Suzzi in reply to McPam]

So sorry you have to go through this I see what it is doing to my husband.Also has major back pain and arthritis in back,acupuncture seems to help a little he has been trying that now.His BP is low now to and used to be high it is the Parkinson meds I think?

[Hidden in reply to McPam]

About  the low BP issue - I had  high BP prior to PD and had all kinds of low BP issues while taking meds to lower BP and C/L for PD. My doctor told me to stop the meds for the high BP because the PD meds has BP lowering effects. That was way back  in 2012 and todate I have neither  low nor high BP. I suggest you look in to it with your doctor. 

[michaela13]

Yes burning in feet and lower Iegs. Low bp. I need a cure!

[Suzzi in reply to michaela13]

Wish someone could find help,just never ends and gets worse with time.You all need a cure.Maybe in our lifetime?

[park_bear in reply to Suzzi]

Nilotinib, someday.

[Beckey in reply to park_bear]

I have been taking Nilotinib for seven years to control chronic myeloid leukemia. My dr. cut my dose down to match the low doses we read about in that early safety study. No response whatsoever.

[viva]

i had exactly the same symptoms when I was on neupro patches 

[Donzim]

Read in an article by an Olympic swim coach that the first sign of fatigue is in the thighs and a signal that the athlete needs to rest.  My husband used to have the leg problem and felt like his thighs were a hundred pounds each.  After an increased supplement plan including lots of coq10, he hasn't complained about this for years.  I have posted elsewhere the supplements he takes and it is extensive, so much so I keep it on a spread sheet.  I seldom show it to doctors but did show it to ones I knew were informed...they were impressed and believed it was what helped keep him in his reasonably good condition which has been compromised due to his recent heart failure.  Do read Mary newports new book on coconut oil which we used very successfully in the past and will start up again.

[Suzzi in reply to Donzim]

Thank you.He does take CQ10 for 9 years now since open heart surgery--before diagnosed with Parkinson's.

[glenandgerry in reply to Donzim]

Donzim  I also give my husband an extensive array of supplements. Would it be possible to get a copy of your spreadsheet? I'm sure I'd find it extremely useful.

Thanks in advance  

[Donzim in reply to glenandgerry]

At granddaughters college graduation .  Will do when I return to Florida.

[glenandgerry in reply to Donzim]

Donzim  many thanks.

Much appreciated.

[judam9]

i have a sciatic nerve pin in my left leg.  it goes from bad to worse or not at all. 

the straighter that i can stand the better it gets,  but when there is a lot of pain, it is very hard to walk straight. and it seems to be getting worse by the day.  it is very painful, and pain -pills don;t help at all..

[Donzim in reply to judam9]

Get to rehab so you will learn the exercises for that.  In the meantime, the hamstring is often involved so gently stretch it out.

[michaela13]

A cure is on the way.

[etterus]

I call it abject fatigue. 

[Donzim in reply to etterus]

Before ubiquinol, my husband used to say he was so fatigued he felt like his life essence was being drained out of him.  First 1200mg then double that of q10 and it helped.  That was brought on by statins, btw. Those were the days when q10 was only in a very large yellow wafer and had to be brought in from Japan.

[silvestrov]

ncbi.nlm.nih.gov/pubmed/244...

[laglag]

Have you had your Vitamin D level checked?   PwP's sometime have low levels of Vitamin D which can cause extreme fatigue.

[Hoxo]

Low B12 causes burning and tingling in feet and legs. It's a classic symptom. It also causes lots of other neurological symptoms that overlap with Parkinsons symptoms. Worth reading up on it and getting tested. If low or even at lower end of reference range worth persuading GP to try you on B12 loading doses and see if tingling in feet symptom improves.

[zadok459]

I experience the same - I think it's the PD