What Causes The Heavy Painful Fatigue Feeling?

[ajw4790]

Hi,

I know it is a somewhat common occurance with many of us, but was wondering what the dysautonomia specialists say is the cause and how to prevent or get rid of the heavy painful fatigue feeling, that occurs mainly in arms and legs?

I understand the basics behind it, muscle fatigue etc.... But, what do the specialist say about this phenomenon and how to deal with it? Because with us I think it is like our response to many things, in that it is not necessarily a normal response.

The heavy feeling I am referring to is like you go to brush your hair and your arm feels like it weighs a hundred pounds and it takes every bit of energy to move it. It also can be very painful at the same time. Normally when this occurs I also have an overall sense of fatigue, but not always. The other day, I felt okay for me, and went to put my hair up and bam it hit me. My arms could hardly move and they were very painful.

What are we supposed to do about this?

Thanks!!!

[Dizzysillyak]

I remember my arms feeling like they had turned to rubber but I can't say I remember any pain. However, I was in constant pain from head to toe from 1990 - 1998 so it was probably happening and I just can't remember it now ...

My heavy arms was due to gluten ataxia and resolved itself when I got the gluten out of my diet ...

As far as the pain ... I've seen a lot of people relate their pain to a variety of vitamin deficiencies ... From B to D to omega 3, etc ... Have you had your vitamin levels tested ? Have you been tested for food intolerances ? These can cause pain too ...

[ramakentesh]

Do you notice blood pooling in your extremities when you feel this?

[ajw4790]

No, it isn't blood pooling. It is in my arms mainly, and it is like a painful intense fatigue.

Also, to go along with this... I am pretty sure I have heard others say that they to have days where they just can not stay upright, it is as if gravity is continously pulling at you and the only way for that nagging feeling to go away is to lay down.

Does anyone sometimes have this to the extent that the pulling or tugging of gravity feeling is so intense that you have to not only lay down, but lay on the floor as flat as possible. If you are on the 2nd floor you would have the urge to go downstairs. You even feel like if you could digging a hole in the ground to get even further down would help to ease that nagging gravity force nipping at you. I know it sounds weird and I probably am describing it weird, but do others have this? What is normally acting up? I am not sure for myself. I normally feel so downright awful at these times and I come close to crying which I do not often do with my symptoms, but with this there is just that nagging force nipping at you that you can't do anything about that overcomes you.

Or is all this just me?

[Dawg Tired]

No, it isn't just you...

I have times when I feel like I just can't get flat enough on the mattress!

As for what to do about it - We would ALL like to know that. Unfortunately, it just seems to be part of it.

Early on, I just knew I would find an answer, get a "magic pill" and I would be well. But it seems all of us are still on that search.

Rest. Try not to "push through it" because you can't.... you just end up wearing yourself out worse.

[mkoven]

sometimes I have to get on the floor and put my legs up at 90 degrees on a chair--get on a corset, salty liquid, and wait for my next dose of midodrine to kick in before I can get up. Since adding florinef this has happened less, but I still have some veriosn of this before my period. It really feels like all fluid in my body is being sucked to the ground. My husband knows I'm struggling if I'm on the floor with legs up on furniture.

[firewatcher]

Have you had your electrolytes checked? Mine swing between the wonky extremes due to my diabetes insipidus and my hydration status. When I feel that heavy, fatigue, it has usually been when my sodium is too low, nausea/lack of appetite=potassium too high. It seems we have a delicate balancing act to perform between the two. After exercise, I REALLY get the heavy feeling with extreme muscle soreness, I tried a bike racer's trick of taking an alka-seltzer after my last Pilates class and I did not get the soreness, or extreme fatigue. Maybe you need a sudden shot of sodium?

[Dizzysillyak]

If your electrolytes are off or you have any nutritional deficiencies, it's a good idea to look at your diet and if that seems ok .. then look at why you may not be absorbing these. Of course, I think of celiac disease first because of my background. But if this is the case, your intestines can't absorb nutrients ... Leaky gut is an option here too though. I'm sure if you google nutritional deficiences they'll give you an idea of how else this can happen ...

Diabetes insipidus means that you're missing the hormone that tells your body to retain water. A freind of mine used to have a severe problem with this and said it's gotten better since she started taking supplements and going on the GFCF low carb diet. It is amazing to me just what foods do our bodies ... I'm an ex junk food junkie myself ...

Healing for some takes time though. My friend, mentioned above who has CFS like I do and is on the GFCF low carb diet, was bedridden for 3 years and is just now after a year and 1/2 getting out and running errands on her own. She noticed an improvement very quickly though when she started taking supplements, including those for detoxing, the Kreb's cycle and the heart (Sinatra protocal).

Our stories are typical for many who go on this diet though ... not that I'm healed completely yet but I've come a long way in the last 3 1/2 years.

[Eillyre]

Hi aj!

I can totally identify with what you've described. When I was very sick with my POTS/CFS symptoms, I had so much trouble with my arms: putting my hair in a ponytail, washing/brushing my hair, brushing my teeth, etc. My mom often ended up washing and or combing my hair for me because it hurt and wore me out too much to do it myself.

We did all sorts of testing to try to figure out what was causing it (including the things previous posts have mentioned), but it stumped us all. To deal with it, I basically avoided raising my arms above my shoulders or using them too much, because trying to "work" my way through the pain only made things worse. As my overall health has gradually improved, the arm issues have, too. Once I could do so without the painful, fatigued feeling, I went back do doing some gentle push-ups and light arm weight exercises to keep the muscles toned.

At this point my arms only really bother me on the very worst of days, and if I rest them, they feel better as the other symptoms gradually quiet down as well. I can use my arms essentially normally now, although I still leave heavy lifting to others (to conserve energy) and find it more comfortable to wash my hair in the sink rather than in the shower, where my arms would be raised above my shoulders for a while.

I know this isn't much help--I would dearly love to know the answer, too!--but I wanted to at least let you know that you're not alone in the wacky arm issue. I thought it was interesting what you said about gravity as well. Most times that I had to lie down, putting my legs up helped. Other times, however, I just felt like I needed to lie as flat as possible and mold myself to the floor; I wished I could sink through the floor, because it seemed like it must help alleviate that "pulling" sensation. Weird, definitely, but true!

Hang in there!

Angela

[faith4christ]

angela--did you find the supplement you take to help repair the tissue or neur. stuff helpful? And did you find the Mayo and Dr. Low helpful? thanks -faith

[mountainsunflower]

I feel horrible when i lift my hands and arms up over my head. Blow drying and brushing my hair are hard activities and so it putting/getting things from the top shelve. My arms feel very, very heavy and fatigued and my heart rate will go up then i get short of breath and feel like i might pass out. It is a horrible feeling. I read somewhere that it a common symptom in POTS(?) but not sure why.

[Kitsakatsa]

Has your thyroid been checked?

Has your B12 level been checked?

Kits

[Sophia3]

I second Dawg's post.

MANY of us have this and if there were an answer, we would not have the chronic exhaustion. but as many know lifting arms over our head provokes symptoms for most of us. Also if trying to stir say, chocolate chip cookie dough by hand (use a kitchen Aid Mixer usually) like I want to add more nuts to the dough after I made a couple of trays of plain cookies, my upper arm muscles fatigue quickly and burn...but when i stop the feeling goes away.

I have been dealing with this for 18 years and it's not improving.

[Eillyre]

angela--did you find the supplement you take to help repair the tissue or neur. stuff helpful? And did you find the Mayo and Dr. Low helpful? thanks -faith

Faith, my answer is yes on all counts!

Mayo & Dr. Low were the real turning point in my illness. He's an excellent listener and paid attention to everything I had written down for him. Based on my tests and the way my illness presented itself, he suggested that I try Mestinon, which has worked wonderfully.

As for the supplements, I would say that the difference they make is not nearly as immediate or "spectacular" as the Mestinon (the last time I missed a couple doses of Mestinon, it was VERY apparent!), nevertheless I do feel and think better when I've been on the NeuroHelp for several weeks/months than when I've purposely stopped taking it for a time (just to see what happens). The only difference that I notice when I've been taking the protein is that my immune system seems to protect me better.

[iheartcats]

angela--did you find the supplement you take to help repair the tissue or neur. stuff helpful? And did you find the Mayo and Dr. Low helpful? thanks -faith

Faith, my answer is yes on all counts!

Mayo & Dr. Low were the real turning point in my illness. He's an excellent listener and paid attention to everything I had written down for him. Based on my tests and the way my illness presented itself, he suggested that I try Mestinon, which has worked wonderfully.

As for the supplements, I would say that the difference they make is not nearly as immediate or "spectacular" as the Mestinon (the last time I missed a couple doses of Mestinon, it was VERY apparent!), nevertheless I do feel and think better when I've been on the NeuroHelp for several weeks/months than when I've purposely stopped taking it for a time (just to see what happens). The only difference that I notice when I've been taking the protein is that my immune system seems to protect me better.

I hate the fatigue feeling, also, and never knew what caused it really. Good post.

Now I have a bottle of Mestinon my doctor prescribed that I am still hesitant to take (I know, I know, but I've had a bad reaction to medicines before, most recently Xanax, and I'm freaked out adding new ones). I think I need it (especially if it helps the fatigue)...so did you notice a difference right away with Mestinon? What was your dosage, if you don't mind sharing? I would like to start it this coming weekend and if it can really help this awful fatigue, it's worth it, I think.