Fatigue is making me crazy

A forum to talk about the general challenges of daily life with MS.

Fatigue is making me crazy

Postby mick_b » Wed Oct 25, 2006 6:15 am

Hi Folks:

Could someone tell me if my MS fatigue is typical?

I have ppms and my left side slowly stopped working over 6 years. Now I wear a brace and I can walk. Some days I feel pretty good, so I go out. Nothing strenuous mind you, just a drive to a store and some walking, maybe lunch. If I’m still feeling good I might run another errand.

BUT (and here’s the part I need help with) If I start to feel a little tired I stop. Then the next day I’m totally exhausted and sick feeling for 2 days or so.

It doesn’t make sense to me why I would get bad overnight?

Does anyone else have fatigue that works like this? It’s driving me crazy because it’s tricky to stay active but not cross the line. I would feel better if I knew that this was typical.

I wish I could get a fuel gauge so I could stop at half a tank.

Mick
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Fatigue is Normal

Postby Melody » Wed Oct 25, 2006 2:05 pm

John used to have terrible fatigue. He would just get up and need a nap. I must admit before he was dx I was getting pretty cross with him. He had suffered with that likely 6-8 years with the last 2 being the worst. As soon as he was dx I started modifying his diet. Here is some of our path and this bottom portion was written in 2005 but it shows the beginnings of where we started taking back control. Right now we have also added glucosamine for inflammation as well as turmeric and bromelain as well as one started just recently Super Vision eye formula with lutein. John site is showing promise of correcting so I've bumped up my efforts. Odd but last night John awoke when our grandson had a dream and noted he saw the time on our bed side clock with his bad eye(optic neuritis stole his vision in 1998)His good eye was covered by the pillow. He mentioned it this morning. I ran my usual vision check and this morning it wasn't seeing anything other than light and fuzzy shapes. Promising though . Keep in mind this is something we are trying it appears to be working for us but as we all know each person is so different. Learn to know your body inside out it has the answers we just need to uncover them. Good luck

Hubby was a Martial Arts instructor in 1998 when it all began He was 34 years old and in fantastic health. He was grappling on the evening of Feb 8 1998 with one of our students. It was a exerting workout. He came home and pretty much went to bed. He awoke the next morning as usual but noticed a problem with his eyes right away. He was blind in one eye. Within the next few days they told him it was optic neuritis. They offered us a steroid treatment which we turned down as being health buffs we know them(our opinion) to do more harm than good in the long run. They mentioned MS as a possible over the next few months but when they ran the first MRI there was only a slight chance he even had a lesion. He had another MRI in 6 months which confirmed 1 lesion but it was inconclusive if it was MS. They thought it had possible been from over exerting while exercising.
Over the next few years he suffered cramping in his hands as well as legs but nothing our GP seemed worried about. He has had restless leg syndrome for years as well as allergies,fatigue and eczema. On Aug 17 2005 we were in Niagara Falls with our grandson at Marineland when he thought he was bitten by something. He had a sharp burning pain in his chest and a numbness down his left side. We headed to the emergency department and they thought he had had a heart attack. We had a cardiologist that just persisted as he was so unsure but all the signs were there but no damage to the heart. Needless to say he put him on Lipitor 40mg in Aug 2004. We are not worried about liver damage at that dose it is normally associated with 80mg. We also get his blood work done every 3 months to be safe. I forgot to mention that in 2003 he was treated on a 3 week course of antibiotic as his stomach was depleted in good bacteria caused by a duodenum bleed as well as hemorrhoids. Not sure if it is relevant. In Jan 2005 we were given the results of his last MRI and he had his original lesion on the brain as well as 4 knew ones on his spine. It was then he was told it was MS. As soon as we heard the word I started scanning the net for all possible treatments. I found we needed to determine allergies as well as intolerances so we started there. We eliminated all soy product, all corn and corn by products all ground nuts, all tree nuts, all squash family all in the same family as peaches all melon family. Then had to pay an additional $120(which we got 80% back from insurance) to run a specific test to check for gluten intolerance. Hubby is not intolerant to that so I've not removed grains from his diet although I choose rye toast as to keep wheat down just incase. Pasta we use a rice pasta instead just as a precaution. As to dairy hubby has 1/4 cup of cottage cheese 1% everyday as it is needed to digest ground flax. That adds 7grams of protein to his daily allowance of 20grams(hard to digest proteins). He also has 1 cup of 1% milk which adds 8 proteins. We are now up to 15 of what I consider (hard to digest proteins). Now we keep red meat down to one serving a week no processed lunch meats at all. Chicken once or twice a week. Seafood twice a week and cold water fish 3-5 times per week. The bottom line is see an allergist as each diet is so different. We eat pineapple fresh as canned the bromelain is missing. Bromelain is a digestive enzyme so very important to assure your food is not hitting your system until it is fully digested. Some people take digestive enzymes but I'd rather go natural if possible. We also add 2TBS of ground turmeric to our foods daily it is an anti-inflammatory. Flaxseed ground fresh and kept in the freezer so as not to go rancid we add 3TBS per day. Just grind it in the blender the seeds are no good whole as they can't be digested and the oil is unstable. Also omega 3 also is an anti-inflammatory. Now we went to St. Mikes and hubby's saw Dr. O'Connor who is running the vitamin D3 trials so he was put on between 2000-4000iu of vitamin D3 daily. It is summer so he takes 2300iu per day and in the winter I'll boost it up. He also takes a vitamin B50 complex as well as a multi vitamin plus 1000mg of vitamin C plus one pill daily of a mix of calcium333mg-magnesium166mg and zinc 2.4mg. He takes 400iu of vitamin E as well as 2000mg of flaxseed oil capsules(keep all oil based pills refrigerated or they go rancid) Those are A-E-D and K plus of course fish and flax or primrose oils. Borax is good as well if you are low on fish oils. Keep saturated fats at a minimum and here is a good site to teach you what is in food. www.fitday.com just use what they offer for free it is plenty. So we know learn of the MS trials John is on Lipitor as well as the vitamin D3 and this is where Copaxone came in. We chose Copaxone as it is synthetic Hubby has so improved that if you saw him you would never guess he even has it. He still has the optic neuritis but it has been improving slightly. The lameness lasted just short of a year and totally disappeared as of June or July(2005) this summer. He no longer has eczema as of this summer(2005) although he has had that all his life. He also had no spring allergies again the first time ever. Now 2 years down.This was pre copaxone as we started that on July 4 2005. We started flax in April 2005 and Turmeric in Feb 2005. He also had restless leg all of his leg and that disappeared in late June again before Copaxone. I'm a great believer in letting your body heal itself and hope this helps. As you can see I'd like a holistic view of where we stand with this and I see no reason why it should affect our lives if we are diligent.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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diet and fatigue

Postby mick_b » Wed Oct 25, 2006 3:41 pm

Melody:

Thanks for the info.

I take it that the fatigue is much better now?

I have taken many dietary steps also but all. You have given me some good tips which I will try.

Thanks for reading (and writing)

Mick
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Postby Melody » Wed Oct 25, 2006 4:25 pm

Actually the fatigue is gone as well as a host of other stuff. As I said that path worked for John for now :wink:
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby ljm » Sat Oct 28, 2006 11:18 am

Melody, since you know so much about fitness and body (among other things) could you possibly address one of the angles of MickB's question which, if I understand, is why he would feel bad for one or two days after the exertion. Its like he is depleting something that normally would take a couple of hours or overnight to recover...but instead its taking his body two or three days to recover. I'm unclear why that would happen.
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exactly

Postby mick_b » Sat Oct 28, 2006 1:04 pm

Hi ljm

This is exactly the problem. Something is depleted, perhaps something which facilitates nerve conduction?

It’s quite strange but I’ve read about it. I was wondering how common it might be. I’ve tried the common drugs they try for fatigue and they have no effect, none.

I seems to me this thing called fatigue comes in a few different flavors.

Thanks for the reply.

Mick
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Postby ljm » Fri Nov 17, 2006 2:45 pm

Mick,

I noticed there wasn't anything further added to your last post on fatigue (specifically, fatigue after some effort). So, I'm going to take a stab. When I had my initial, problems, I saw a GP who recommended an extensive list of supplements. He was a very old man (he retired couple of months later, about 75 I think) and his explanations fo the supplements were sort of vague, but that fact is, everything I have read in the year since then has supported his advice. Except for selenium. I've never seen it mentioned for MS but he recommended I take quite a lot...and take it specifically to help me because I was all wobbley/weak after exercise. I googled and came on couple of reference to selenium which I can't understand. I'm inserting one below NOT because I think its the answer to your fatigue, but suggesting you make sure you're giiving your body everything you can to help it. I am still something weak after exercise, and I'm gonig to keep looking for way to strengthen up, and in particular look at non-ms approaches like body building approaches.

Oh yeah, forgot to mention, the research below iwas on rats. But still. I'm just trying to suggest there are possibilities.

Selenium deficiency, endurance exercise capacity, and antioxidant status in rats.Lang JK, Gohil K, Packer L, Burk RF.
Lawrence Berkeley Laboratory, University of California, Berkeley 94720.

Increased O2 metabolism imposed by physical exercise is likely to augment the production of active O2 species that have been shown to react with lipids, proteins, and DNA. Antioxidants and antioxidant enzymes, such as the selenium enzyme glutathione peroxidase, minimize or prevent such potentially toxic reactions. This study shows that selenium deficiency decreases glutathione peroxidase activity in liver and muscle (less than 80%, P less than 0.001), increases total glutathione in liver, muscle, and plasma (P less than 0.05) and increases muscle cytochrome oxidase activity, and ubiquinone content (P less than 0.05) but has no effect on endurance capacity. Exercise to exhaustion resulted in a significant (P less than 0.001) elevation of total and oxidized glutathione (GSSG) and a significant (P less than 0.05) decrease of vitamin E in plasma of control and selenium-deficient rats. Acute exercise also increased tissue GSSG levels in both control and selenium-deficient groups of rats. Hence, despite a large depletion of selenium-deficient glutathione peroxidase, pronounced oxidation of glutathione to GSSG can be produced by the increased oxidative metabolism during physical exercise. The results suggest that the residual glutathione peroxidase activity is sufficient to detoxify hydroperoxides in exercising selenium-deficient animals and to prevent the impairment of endurance capacity.

PMID: 3436884 [PubMed - indexed for MEDLINE]
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Postby sh8un » Fri Nov 17, 2006 2:57 pm

Hi
I was just reading this site before I saw your post. Mentions fatigue a little. Thought you might like to see it. I have just started taking some b complex vitamines so I am trying to reas up as much as I can.
Hope this helps
NN

oops...forget to post the URL...here it is http://www.ms-diet.org/
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Postby Melody » Fri Nov 17, 2006 3:24 pm

ljm wrote:Melody, since you know so much about fitness and body (among other things) could you possibly address one of the angles of MickB's question which, if I understand, is why he would feel bad for one or two days after the exertion. Its like he is depleting something that normally would take a couple of hours or overnight to recover...but instead its taking his body two or three days to recover. I'm unclear why that would happen.


I'm unsure but have noted if John over does it his recovery is also delayed by a couple days.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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fatigue crazy

Postby mick_b » Mon Nov 20, 2006 10:16 am

Ljm:

I read your post and found it really interesting. I had to read it a few times to get what they are saying, but a toxic reaction to exertion seems to fit my experience perfectly. I feel more than fatigued, I actually feel ill. It could very well be that I am suffering the effects of this toxin. I have selenium but I haven’t been taking it. I am going to start now.

Sh8un(NN)

Thanks for the post. I do take mega doses of vit b12 and D along with a host of other supplements (many anti oxidants). I also get b12 shots. I have a very clean diet, avoiding all dairy and any preservatives and strange additives. Pretty plain stuff. I’m goint to spend some time on diet related stuff. Thank you for reading and posting.

Hopefully, I can find the solution to this nasty fatigue thing. I appreciate everyone’s help.

Man, if I can get the fatigue improved a little and get rid of the low back pain I’d be good to go!!!

Thanks again everyone.

Mick
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Postby CureOrBust » Tue Nov 21, 2006 2:27 am

have you tried ALCAR?

<shortened url>

A reduction of FSS score was observed in 70% (21/30)of patients during ALCAR treatment and in 43% (13/30)of patients during amantadine intake (McNemar test,p = 0.073). Using a decrease 0.5 in FSS score as a clinicallyrelevant cut-off, we found that 29% of patients improvedafter ALCAR vs. 21% after amantadine (McNemar test,p = 0.549)

Not an overwhelming number, but something.

or on this site: http://www.thisisms.com/article64.html
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Post-exertion Fatigue

Postby mick_b » Tue Nov 21, 2006 8:22 am

CureO:

I have tried amantidine but not ACLR. I will definitely look into it. It seems affordable enough. I also tried 4-AP (bird poison) at my Neuros suggestion – no luck. I was very carefull not to exert myself much over the weekend and felt tired on mon. but not ill. Today I feel great. I’ll try the ACLR if the Dr. agrees and let you know what happens.

Thanks very much for the post.

Mick
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Re: Post-exertion Fatigue

Postby CureOrBust » Wed Nov 22, 2006 12:26 am

mick_b wrote:I also tried 4-AP (bird poison) at my Neuros suggestion – no luck

How did you get your hands on that? I thought it was only available on the trial they did, or from some chemical firm in europe.

Is this a drug used for treating something else (ie other than killing birds)? If so, what was it called?
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Postby ljm » Wed Nov 22, 2006 12:39 am

It looks like 4-ap is available through compounding pharmacies in U.S. with a physician's prescription (according to a few google references).
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Postby CureOrBust » Wed Nov 22, 2006 3:52 am

now I am finding the links. thanks
4-AP (4-Aminopyridine) is potassium channel blocker medication which may reduce symptoms in some people with MS, particularly those who are more sensitive to heat.

mick-b, are you heat sensitive? I dont think I am, so DOH!

Although not officially approved, 4-Aminopyridine has been available by prescription through compounding pharmacies in the U.S. and elsewhere for years. However in the U.S. the FDA is attempting to regulate the compounding pharmacies, and 4-AP may be one of the first drugs that the FDA may withdraw from the compounding formulary because of concerns over variable formulation. However, 4-AP does appear to be available through compounding pharmacies in other countries worldwide. (NOTE: Agriculturally, 4-AP is used as a bird poison sold under the brand name Avitrol. It is highly toxic to all mammals including humans if dosages are exceeded.)
http://www.remedyfind.com/treatments/126/1634/
I will also include the following link, just for my easy reference later...
http://www.communitydrug.com/Article_Display.cfm?ArticleID=17&CategoryID=7
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