[Aliya]

Do any of you find you have fatigue? I ask mainly because I have felt as if I have had worsening fatigue over the last few years...Wanted to know if there was anyone else out there who also had this issue along with all the rest.

Also, another bizarre thing...I have a bit of a tremor, essential tremor (the familial tremor) runs in the family my mother and aunt both have it. My tremor comes and goes, and is worse with anxiety, etc. Per my neuro, I have the "wrong" type of tremor for it to be Parkinson's/etc., she's not even sure it's the familial tremor at the moment, and doesn't know what it is but thinks it may have to do with stress and/or nutrition. However, I have been noticing that it is there something very odd about it--I can get it right after I wake up, as if my body seems to be stressed by the act of waking up. Has anyone had something similar?

[daniella]

Hi again I replied to the other thread but had another thought with this. Do you have bowel issues? You mentioned diet as well and I wonder if you had said you were tested for gluten or had any other stomach conditions. I do know for me my stress and severe anxiety does not help my pain or symptoms. I went back to a psych about 3 months ago and though I am still on constant edge I do see some benefits. So you may want to look into that. The fatigue with low b levels that can be but also have you been tested for fibromyalgia cause I think low d levels can have that as a sign as well. Feel better

[diagnonsense]

A parkinsonian tremor looks like they are rolling a coin/pill in their thumbs.
(my grandpa has parkinsons)

As for fatigue.. I am sleeping (nap) by 3pm.
And then I am down for the night by 8-10 pm.

I'm only 23 years old.. no kids to wear me down.

[Aliya]

A parkinsonian tremor looks like they are rolling a coin/pill in their thumbs.
(my grandpa has parkinsons)

Yeah, this is definitely different, then. Looks nearly identical to my mother's essential tremor (mine does). I just find it odd that waking up can bring it on...Very bizarre. Then again, my aunt's is 24 hours a day, so....

Do you have bowel issues? You mentioned diet as well and I wonder if you had said you were tested for gluten or had any other stomach conditions. I do know for me my stress and severe anxiety does not help my pain or symptoms. I went back to a psych about 3 months ago and though I am still on constant edge I do see some benefits. So you may want to look into that.

Yeah, kinda, now that you mention it. I pretty much have an inability to gain weight (or rather, it's hard for me to do, regardless of how much I eat). Like, a lightening metabolism or something. My sister is the same way. I also have reflux issues. I've never been tested for gluten sensitivity...Never even thought of that, actually, until now...That's an interesting idea. Who would I go to for that? As for the stress/anxiety issue, hard (as I am sure you know ) to get the anxiety under control when you don't know what's wrong with you and are so scared over the possibilities...Still, I am attempting to address that issue as best as is possible, I started taking an antidepressent/antianxiety medication about two weeks ago.

[mrsD]

Aliya,

Another thing to look for is viral. Viral illnesses can cause alot of fatigue.

Both Herpes simplex and Herpes Zoster (chickenpox) can be latent in the body and rear up now and then.Both live in the nerves and can cause pain.

There are blood tests for both. It might be a good idea to have that tested. L-lysine can keep them sleeping. A diet high in arginine will activate the virus for some people. That is when symptoms come. There may be symptoms with no skin lesions.
here is a chart about arginine containing foods:
http://www.herpes.com/Nutrition.shtml

Typically 1 or 2 grams a day of L-lysine is the typical dose.

Viral symptoms may return with stress. This lowers the immune system and allows the virus to live in tissues after being dormant.

[darlindeb25]

Who would I go to for that? As for the stress/anxiety issue, hard (as I am sure you know ) to get the anxiety under control when you don't know what's wrong with you and are so scared over the possibilities...Still, I am attempting to address that issue as best as is possible, I started taking an antidepressent/antianxiety medication about two weeks ago.

You sound like you definitely need to be checked for gluten intolerance, your sister too. Thing is, unless you have celiac disease, they can't tell if you are gluten intolerant, only by testing the waters, meaning, after being tested for celiac, if you get a negative response, then you should try the gluten free diet. There is no test for gluten intolerance, not really. I am gluten intolerant, some doctors tell me I am not celiac, others say I am. My blood work says "double DQ1 genes" which are gluten intolerant genes. I have been gluten free for nearly 9 yrs. I too, have neuropathy, which I'm sure was caused by all my years of malnorishment because of gluten in my system. I also had terrible anxiety, and panic attacks. First I was on Xanax, then Paxil, for years before going gluten free. To this day, I keep Xanax on hand for bad days.

Your PCP can have you tested, of you could go for a specialist, such as a gastro doc. Do not take no for an answer, don't let them say, "You don't look celiac." There is not really a look about us, I gained weight when I was malnourished, my sister lost. My sister is a diagnosed celiac, and our dad is gluten free, she for 9 yrs, he for 4 1/2 yrs. They should do testing for Gliadin levels, being IGA, and IGG, along with HLA typing, for celiac disease. You should also have your B12 level checked and your Vit D level.

As for fatigue, I also have chronic fatigue, because of high Epstein Barr Virus levels. It's difficult having fatigue. I also am diagnosed with sleep apnea, and on CPAP. With chronic fatigue, the general RX is rest and exercise. With celiac disease/gluten intolerance, the RX is a gluten free lifestyle, totally gluten free.

[daniella]

Hi. Yes I agree to get tested and your gp can start the intitial or go to see a reumatologist and gastronolgist. As for the anxiety trust me I understand. I live in fear of my health but really getting the support/meds can really help with this. I waited too long to do so and now I see where it got out of control my coping because I did not have the assistance I needed. It is not being weak to get mental help and can make this easier to cope with. Take care

[Aussie99]

Yes I had fatigue from PN. Both from my meds making me sluggish and from the PN. Although I was exhausted I didn't sleep well and always felt completely exhausted the next day. Without sleep I would also have both tremor and chills and aches and pains all over.

[iconophile]

Originally Posted by Aussie99

Yes I had fatigue from PN. Both from my meds making me sluggish and from the PN. Although I was exhausted I didn't sleep well and always felt completely exhausted the next day. Without sleep I would also have both tremor and chills and aches and pains all over.

Yeah... hmmm... sounding very familiar.

Not "tired," per se, just having zero energy with about the same amount of concentration ability.

I'm slack-jawed at people in the PWP forum writing about exercise programs they take part in – amazing, because I can hardly walk more than a couple blocks before petering out. Fatigue has been an issue since I was first dxd a couple years ago. The neuro's don't really seem to know what to do about that symptom; they just kind of glaze over, say "Okay," and then never return to the issue.

For me, fatigue can cut in after doing something simple like scrambling eggs, or trying to follow a moderately-paced discussion. The only thing that "fixes" it is immediate sleep (sometimes for several hours pending usual poor quality).

Sound familiar to anyone else..? Is this typical for PWP..?

[Leslie]

Originally Posted by Aliya

Do any of you find you have fatigue? I ask mainly because I have felt as if I have had worsening fatigue over the last few years...Wanted to know if there was anyone else out there who also had this issue along with all the rest.

Also, another bizarre thing...I have a bit of a tremor, essential tremor (the familial tremor) runs in the family my mother and aunt both have it. My tremor comes and goes, and is worse with anxiety, etc. Per my neuro, I have the "wrong" type of tremor for it to be Parkinson's/etc., she's not even sure it's the familial tremor at the moment, and doesn't know what it is but thinks it may have to do with stress and/or nutrition. However, I have been noticing that it is there something very odd about it--I can get it right after I wake up, as if my body seems to be stressed by the act of waking up. Has anyone had something similar?

Aliya -

Do you take lyrica or amytriptylene? I do have some fatigure but the amytrip and the lyrica cause me to constantly fight sleep. If I get still I can easily go to sleep. Could it be the drugs you take?

Leslie