Does anything besides activity give you PEM?

[ukxmrv]

That's why I put "PEM" in quotes, in order to indicate that the food fatigue wasn't from exertion.

Is it fatigue "only" that you have as PEM?

 

[PNR2008]

Word finding and extreme fatigue and acting odd have not been new to me since I've had migraines since 11 years old. They got worse with CFS/ME and then with menopause. I could be sick with other things and finish it off with a migraine. In my fifties I got just the aura which was a new experience since before it was always followed by horrific pain.

Finally I said "the hell with it" and got botox shots for migraines and they have worked for about 13 years and are still working. Since MRI showed Ischemic changes in small blood vessels due to migraine, I had my proof that migraines aren't benign. Why would a pain that causes screams mean nothing?

The fatigue after a migraine is excessive and can last for days and yet it's different from PEM, just like the word finding is different slightly, maybe because of the chemicals released during migraine are different from chemicals released during PEM.

All I know is, when my sister who is obsessive-compulsive comes over to help me with paperwork, I am stressed, have eyestrain, must get up 20 times to find things for her, keep my dog from kissing her a lot that by the time she leaves, I have PEM AND migraine fatigue if one gets past the botox. I'm in bed for days but the paperwork is finally getting done. OH HO.

 

[Marco]

For want of a better word - 'frustration'.

Outside of crashes I'm pretty physically able as long as I keep it slow, non-aerobic and low intensity. For example I can do light gardening and shift and split firewood but if I come across a weed that's tough to shift of a log that won't split cleanly it can pretty rapidly cause a crash and PEM. I don't think its due to increased exertion.

The same with something that becomes mentally tough. It feels as If my brain just locks. 'Stress' perhaps?

 

[Dufresne]

I wonder if PEM isn't actually something that happens in the brain, and so even thinking or listening can cause it.

I wonder if it is only from brain activity or if it is also from bodily activity.

This is precisely what I've thought, though I can't point to an exact mechanism.

Physically I'm still probably in the upper 10%, judging from muscle size, and I suffer no muscle/fibro pain. I can still bench press a couple hundred pounds despite not exercising for about 9 years. The problem is I'll crash hard with symptoms of headaches that come and go every few seconds, heavy depression, a pounding heart, sweating, etc. A single, grunting repetition will bring this about. And yet I can walk miles without a problem. So for me this comes down to exertion and not total energy expenditure. I believe heavy physical exertion hits the nervous system and/or HPA axis pretty hard.

The other activity that will produce PEM is reading; more or less as I described above, though a lesser form of it and perhaps without the pounding heart and sweats. Reading a hundred words without stopping will do this to me. I don't feel like I'm exerting myself either. I can seemingly exert myself a hell of a lot more over a game of chess and not provoke these problems. As I read I can feel my calves twitching more and more. This is a symptom I've been able to link up to oxidative stress that feeds into glutamate excitotoxicity.

I'm pretty sure it's mostly a matter of oxidative stress in the nervous system for me. I know my babesia duncani as well as neuro-borreliosis are factors. I also have a 2:1 a/v block, which is not so uncommon with Lyme and co, and this might explain the pounding heart and arrhythmia.

Dosing with opioids blocks my PEM from both mental and physical stressors. I know this is a clue as to what's going on but I haven't the knowledge of brain physiology to figure it out.

Paul Cheney has suggested there's an abundance of oxidative stress from some unknown mechanism that impinges on a number of systems. We produce symptoms based on which systems are failing. He explains this is why there's such a variety of manifestations. The HPA axis is just one symptom he refers to. He also talks about the gut, P450 system, etc. I think he's on the right track.

 

[nandixon]

Is it fatigue "only" that you have as PEM?

I have a generalized weakness as well, that's been present from the start of this disease, and this also becomes worse - like the ever present debilitating fatigue - during PEM.

Actually, my first several years I spent going to neurologists thinking surely I must have something along the lines of ALS...

Lots of other problems that remain relatively constant all the time irrespective of exertion, like sleep that's very shallow, IBS, frequent urination, minor heart irregularities, etc. Those also have been present from the start.

My illness has worsened in a steadily progressive manner over the years.

(I have some of the more common lab findings for ME/CFS, like low vasopressin and low natural killer cell function, also low aldosterone, low CoQ10, lipid peroxidation, etc.)

 

[Elph68]

That's why I put "PEM" in quotes, in order to indicate that the food fatigue wasn't from exertion.

Nevertheless, the fatigue that I experience from eating certain foods (and certain supplements) feels exactly the same to me as the fatigue I experience from over-exerting myself with too much physical activity, and it occurs with the same sort of delay. (And that's been true since the start of my ME/CFS some 17 years ago.)

It's important to be aware that the physical/mental state that we perceive as "PEM" following exertion could also, in theory, follow from other things that don't actually involve physical or mental exertion.

Just as a simple hypothetical to understand the concept, say that some substance like a cytokine (or whatever) becomes elevated during exercise and this, through some mechanism like activated microglia and/or oxidative stress (or whatever), is what triggers a person's PEM.

Now what if certain foods, for whatever reason, trigger that same cytokine/substance that exercising does and that it has the same biochemical effect? A person could end up feeling the same - with no distinction between PEM from actual exertion and "PEM" from food.

I reckon you will find that your PEM is actually lactic acidosis resulting in soft tissue calcification ....

Milk, wheat, chocolate, simple sugars and many others can be converted into lactic acid giving you the symptoms you describe ...

Be interesting to see if Bicarbonate soda dissolved in water plus magnesium injections resolve/reduce this ....

Cheers.

 

[nandixon]

@Elph68
Thanks. No, I've had extensive testing for lactic acid, i.e., testing by exercise followed by blood draws and/or multiple muscle biopsies. It's always been perfectly normal.

I'm pretty certain that the problem "substance" that I was alluding to, in my case, is actually serotonin (another chemical that, like lactic acid, also increases with exercise).

I'm going to make another post with additional information on the biochemistry and genetics of this on another thread sometime soon.

 

[Research 1st]

My 2 cents...

When thinking of PEM or PER (Post exertional relapse) we first have to separate having used our brain or muscles (including heart and lungs), from the symptoms and disabilities this causes.

E.g in severe cases of ME CFS:

Physical - MUSCLE:

One may be stable, used to walking around the house in episodes, mostly confined to the sofa or bed.
On an energetic rare day, one may be able to walk/stand more than usual, even leave the home. This will cause a latent reaction. A reduction in function of physical or mental capacity, such as difficulty thinking, vertigo, pain, overwhelming exhaustion, weakness etc. This weakness is not expected, explained and a huge reaction to minor exertion. This is hallmark of ME, as is exercising the brain....

Mental - BRAIN USE:

One may be able to talk for limited bursts, use the PC for episodes, watch a short TV show.
Talking for extended periods and concentrating may cause an extreme reaction, such as not be able to physically move limbs, speak, and induce severe vertigo, pain, and very severe headache (on top of the permanent ME headache severe PWME report they never experienced before the condition started).

There are two main theories postulated by the medical community for such an extreme reaction in people with 'normal' muscle function at rest, and normal muscle pathology..

1) ME is a neurotic belief in ME. (CDC, British Psych Lobby approach). This idea has failed.
2) ME is a mitochondrial infection/reaction within parts of the CNS that causes massive energy dysfunction reducing in abnormal nerve firing/cell to cell communication with a combined immune disorder involved in low grade inflammation of the CNS that is 'irritated' by these energy cells being 'used' (using your brain or body).

We know, and science is slowly proving, 2) is the accurate view but will need a huge amount of scientific input to now prove, due to the mainstay of research using Fukuda CFS criteria (CDC), and not researching the severely affected to get the data!

In my view, the massive 'exhaustion' ME causes from using your brain, can have a more extreme affect
than physical effort if we are debating how much 'effort' the person uses Vs muscle power and cardio respiratory input. E.g a PWME with ME who concentrates for 1hr hard, may have a worse relapse, than the same PWME who walks around for 30 mins.

There has to be an explanation for this, the simple one being the energy defect is brain centered/CNS, and not muscle based. It could also be explained by oxygen utilization. Someone far clever than I will be able to tell you the oxygen and glucose demand on the BRAIN from reading for 1hr, Vs the oxygen and glucose demand on the BODY for gently walking around for 30 mins. If your brain cells cannot use glucose efficiently, then your brain cells won't work correctly and will 'wilt' quickly.

This utilization of oxygen from exercise in people with elevated oxidative stress AT REST (PWME CFS) will cause a cascade of further oxidative stress in the body (from gentle exertion) and DNA damage, that presumably is higher than 'thinking' with the brain. The question is though, is the brain in PWME already undergoing significant oxidative stress at rest? Is 'thinking' with exhausted mitochondrial cells in PWME's brain what causes the lactate to rise in the CNS and not physical exertion. (CFS research shows, high CSF lactate in sufferers). Could this explain why concentrating with 4 people in a room may annihilate a PWME more than walking up the staircase 4 times, which A PWME may also find very taxing, but not as relapsing?

To confuse matters further we must remember here that the 'delayed payback' of PEM and PER can be interchangeable with BRAIN vs MUSCLE.

*One time period you CAN talk for 1 hr without huge relapse.
*Another time period the staircase you could walk 4 times in one day, 1 attempt and you can't get off the floor.
And vice versa....

Either way, main stream medicine and the wider public (due to propaganda by the psych lobby) don't believe patients with severe ME are 'severe' other than from the process of de-conditioning. For me (biased view), it's obvious. The brain's cells used for cognition and some other areas in PWME simply don't work at rest efficiently, and become so depleted (when used) so badly the ME sufferer produces signs of neurological dysfunction (mimic 'real' neurological diseases) I've mentioned before, or worsening of the following if present at rest:

Worsening of pain.
Eyelid twitching.
Eye ball involuntary movement.
Eye drooping.
Stammering or Stuttering.
Slurred speech.
Gait changes (balance).
Vertigo and dizziness.
Blurred vision, double vision.

The above symptoms are rarely witnessed in a doctors office, because it takes TIME to relapse the patient from thinking/talking. A GP appointment may be only 5 to 15 mins, not 30-60 mins. Doctors thus rarely 'see' the patients neurologically decline in front of them. Conversely, partners and carers......do. Another phenomena of 'statistical data' (never produced) missing PER rather than PEM, is patients tend to 'save up' for doctors appointments and/or the appointment is at the 'start' of the patients day. Doctors appointments don't occur at 7pm onwards, when the patient may be massively worse. Doctor's don't see this.

These symptoms in severe PWME are in reaction to MENTAL exertion, and thus the brain cells ATP is depleted/cells are likely inflamed and targeted by a form of autoimmune process. No other condition does this to this level, to my knowledge in which if rested the patients can return to 'normal'. (Normally disabled). Yes MS, Parkinson's can and will relapse from exertion of mental effort, but these people have permanent damage, such as paralysis, or the Parkinson walk ('shuffling gate'). Hence, ME is disbelieved.

None of the above extreme PER or PEM can be predicted for or managed, hence 'Pacing' does not and cannot 'fix' the underlying cause by trading of energy from one task to another or simply cutting back on total energy expenditure.

Pacing to 'manage' ME and return people to consistent activity levels, is a myth. The immune system activation simply doesn't allow for consistency, neither does the metabolic ATP defect. Each day we feel very ill, ghastly, a little better, or like we're dying - irrespective of what we do. This is how ME works. We are made worse by any activity, but we fluctuate anyway, even when we don't over exert and do literally, nothing. We also relapse, via stress or infections (inflammation and hormone associated) or indeed, 'unknown' factors of the pathology no one understands...yet.

Pacing is a sensible common sense approach to energy management, not over doing things. All patients with ME CFS do this once they are diagnosed and (late in the day usually) forced to learn how to listen to their bodies when experiencing this terrible illness. However, in ME, pacing as an effective 'therapy' does not apply.

From listing to patients, and ignoring the CDC's disinfo about GE, we can see that:

*ME patients are in a permanent state of metabolic and thus bodily exhaustion AT REST.
*Activity makes us worse and causes an immune response (raised lymph glands, sore throat, sneezing in some).
*Brain activity can produce equal or worse response to physical activity - a surprising finding if ignoring neurology.
*Severe grade patients can have permanent relapses from moderate activity who do 'pace', who don't boom n' bust.


For PWME, the CDC's 'Post Exertional Malaise' (feeling a bit off), is an insult to the nature of LOSS OF FUNCTION PWME suffer from minimal exertion of brain or body. Post exertional relapse, is thus a better term. (PER), in my view as patients dontt feel worse, they become disabled from activity/worsen existing disabilities. That cannot ever be described medically, as a 'malaise'. The CDC's description of CFS, for ME or ME/CFS is thus insufficient and incorrect.

NB: Sufferers less ill who haven't developed a severe form of ME won't experience these reactions to the level severe grade patients will. This allows for inevitable disagreement in patients to occur.

A concern of mine, is there is nothing stopping mild or moderate patients pushing themselves into a severe form of ME, from repeat, or even 'one off' over exertion that results in a strong immune response, apparent immune suppression (if repeated) and then an infection, that one-day 'gets' you, and you literally become severe grade and screwed for life. Multiple PWME have told me this story, they were told to exercise, told to ignore symptoms told to mix CBT with GE and ended up severe grade for ever. Conversely, it appears less severely affected people were diagnosed earlier, and didn't damage the bodies for as long. Is this why time and time again we hear that ex exercise and adrenaline junkies end up severely affected? It would seem logical these unfortunate people are experiencing massive oxidative injury (whilst moderately ill), unaware, that they have ME CFS, and unaware that this can causes them to end up housebound.

It greatly worries me a percentage of PWCFS end up as PWME, needlessly, but pushing (within or over limits) only
to become permanently disabled believing the were safe. I am biased, because I was one of these people.

As anyone with severe ME CFS will tell you, no one is 'safe' with activity, as we have no idea what the pathogen reservoir is (if any), and what causes us to get worse, other than simply expending energy! The sensible thing to do is listen to your body, and achieve some form of activity level, that generally doesn't cause severe worsening of symptoms.

For PWME severely affected, they will agree, but point out they have over whelming symptoms AT REST and are in permanent state of metabolic energy crisis (defective ATP), meaning the concept of PEM to them is silly. Many would argue, that people with such bad at rest exhaustion are original ME, and not CFS Fukuda criteria.

With biomarkers, we can finally decide once and for all, but the biomarkers won't be of any use in a heterogeneous cohort of non severely affected. Catch 22. We need to compare severe Vs Moderate Vs mild to come to a conclusion about the scientific and medical reasons of PEM and PER, and which subset of ME CFS has 'it and why.

 

[lansbergen]

NB: Sufferers less ill who haven't developed a severe form of ME won't experience these reactions to the level severe grade patients will. This allows for inevitable disagreement in patients to occur.

Sadly that happens to often.

 

[adreno]

I'm pretty certain that the problem "substance" that I was alluding to, in my case, is actually serotonin (another chemical that, like lactic acid, also increases with exercise).

In that case, you might be interested in this:

J Nutr. 2006 Feb;136(2):544S-547S.
A role for branched-chain amino acids in reducing central fatigue.
Blomstrand E.

Abstract
Several factors have been identified to cause peripheral fatigue during exercise, whereas the mechanisms behind central fatigue are less well known. Changes in the brain 5-hydroxytryptamine (5-HT) level is one factor that has been suggested to cause fatigue. The rate-limiting step in the synthesis of 5-HT is the transport of tryptophan across the blood-brain barrier. This transport is influenced by the fraction of tryptophan available for transport into the brain and the concentration of the other large neutral amino acids, including the BCAAs (leucine, isoleucine, and valine), which are transported via the same carrier system. Studies in human subjects have shown that the plasma ratio of free tryptophan (unbound to albumin)/BCAAs increases and that tryptophan is taken up by the brain during endurance exercise, suggesting that this may increase the synthesis of 5-HT in the brain. Ingestion of BCAAs increases their concentration in plasma. This may reduce the uptake of tryptophan by the brain and also 5-HT synthesis and thereby delay fatigue. Accordingly, when BCAAs were supplied to human subjects during a standardized cycle ergometer exercise their ratings of perceived exertion and mental fatigue were reduced, and, during a competitive 30-km cross-country race, their performance on different cognitive tests was improved after the race. In some situations the intake of BCAAs also improves physical performance. The results also suggest that ingestion of carbohydrates during exercise delays a possible effect of BCAAs on fatigue since the brain's uptake of tryptophan is reduced.

PMID: 16424144

 

[nandixon]

Thanks @adreno! I had actually seen that before and tried the BCAAs, but no luck. I think it's going to require an actual TPH2 inhibitor, like I mentioned here:
http://forums.phoenixrising.me/inde...rtion-have-in-common.34799/page-4#post-544218

 

[Gondwanaland]

I'm pretty certain that the problem "substance" that I was alluding to, in my case, is actually serotonin (another chemical that, like lactic acid, also increases with exercise).

In that case, you might be interested in this:

BCAAs raise ammonia and uric acid so I can't take them (unless I take a ton of other stuff to relieve the ammonia and uric acid excess). 30mg of 5-Htp cause me serotonin syndrome due to +/+ MAO-A. I am looking for a solution to that.

I think it's going to require an actual TPH2 inhibitor, like I mentioned here:
http://forums.phoenixrising.me/inde...rtion-have-in-common.34799/page-4#post-544218

I am hoping I can understand what's written there

 

[Kimsie]

My 2 cents...
{...}
In my view, the massive 'exhaustion' ME causes from using your brain, can have a more extreme affect
than physical effort if we are debating how much 'effort' the person uses Vs muscle power and cardio respiratory input. E.g a PWME with ME who concentrates for 1hr hard, may have a worse relapse, than the same PWME who walks around for 30 mins.

At this time I am holding to the idea that PEM, or PER, is actually caused by using the brain and not by physical exercise. No one can do any kind of physical activity, even walking, without using their brain to do it, so all physical activity involves brain activity. This is why in the Rest Periods thread I say that anything except lying down with eyes closed and letting your mind drift is an activity.

There has to be an explanation for this, the simple one being the energy defect is brain centered/CNS, and not muscle based. It could also be explained by oxygen utilization. Someone far clever than I will be able to tell you the oxygen and glucose demand on the BRAIN from reading for 1hr, Vs the oxygen and glucose demand on the BODY for gently walking around for 30 mins.

Sarah Myhill has done testing that shows that in ME/CFS there are problems with energy production in the neutrophils from blood, which shows that the energy problem isn't limited to the CNS. I think that the brain is the part of the body that is sensitive to whatever is causing PER, but it is occuring in the whole body. However, the rest of the body has more resources for energy production because the BBB limits the amino and fatty acids available to the brain, and so the problem is probably more severe in the CNS than in the peripheral parts of the body.

If your brain cells cannot use glucose efficiently, then your brain cells won't work correctly and will 'wilt' quickly.

I think you may not have this quite correctly. PER usually occurs many hours after the exertion begins. I think the brain is using an alternative pathway for ATP production, and the alternative pathway causes an increase in something else, whether that is lactic acid or serotonin or whatever it is, and that something else causes the PER. It is that something else that makes the brain cell unable to work correctly. I am trying to figure out what that something else might be, and how it causes PER.

This utilization of oxygen from exercise in people with elevated oxidative stress AT REST (PWME CFS) will cause a cascade of further oxidative stress in the body (from gentle exertion) and DNA damage, that presumably is higher than 'thinking' with the brain.
{...}

These symptoms in severe PWME are in reaction to MENTAL exertion, and thus the brain cells ATP is depleted/cells are likely inflamed and targeted by a form of autoimmune process. No other condition does this to this level, to my knowledge in which if rested the patients can return to 'normal'. (Normally disabled). Yes MS, Parkinson's can and will relapse from exertion of mental effort, but these people have permanent damage, such as paralysis, or the Parkinson walk ('shuffling gate'). Hence, ME is disbelieved.

I think that the increase in symptoms from the oxidative stress can be attributed to an increase in damage of the iron-sulfur clusters in the electron transport chain (you may not have read my hypothesis about how these illnesses are caused by oxidative damage to the iron-sulfur clusters in the electron transport chain of the mitochondria, but bear with me, this all is according to a hypothesis that I am working out.). Hopefully I am correct about this because this type of damage would be much more easy to correct than DNA damage.

I agree that there must be inflammation involved. At this time I think that the inflammation may largely relate to a problem with low norepinephrine, but I won't explain why the norepinephrine would be low here because I have talked about that in other threads. Norepinephrine help regulate inflammation in the brain. It also appear to have a role in regulating NO synthesis. Because of this, the depression of norepinephrine means that the same underlying cause of ME/CFS can cause other illnesses depending on the genetic weaknesses of the individual.

None of the above extreme PER or PEM can be predicted for or managed, hence 'Pacing' does not and cannot 'fix' the underlying cause by trading of energy from one task to another or simply cutting back on total energy expenditure.

Pacing to 'manage' ME and return people to consistent activity levels, is a myth. The immune system activation simply doesn't allow for consistency, neither does the metabolic ATP defect. Each day we feel very ill, ghastly, a little better, or like we're dying - irrespective of what we do. This is how ME works. We are made worse by any activity, but we fluctuate anyway, even when we don't over exert and do literally, nothing. We also relapse, via stress or infections (inflammation and hormone associated) or indeed, 'unknown' factors of the pathology no one understands...yet.

Pacing is a sensible common sense approach to energy management, not over doing things. All patients with ME CFS do this once they are diagnosed and (late in the day usually) forced to learn how to listen to their bodies when experiencing this terrible illness. However, in ME, pacing as an effective 'therapy' does not apply.

It isn't really clear to me what you include in the word "pacing". In my post on Rest Periods I suggest breaking up period of activity with periods of complete rest. Since activity includes listening or actively thinking, rest means lying with eyes closed and thoughts drifting along, not active thinking. So do I understand you to mean that when you say do literally, nothing, you mean this kind of rest or do you mean that the person might be thinking about or listening to something? Is there a possibility of having short thinking activity times interspersed with not thinking rest periods?

 

[Kimsie]

@Elph68
Thanks. No, I've had extensive testing for lactic acid, i.e., testing by exercise followed by blood draws and/or multiple muscle biopsies. It's always been perfectly normal.

I'm pretty certain that the problem "substance" that I was alluding to, in my case, is actually serotonin (another chemical that, like lactic acid, also increases with exercise).

Have you ever taken any 5-HTP? If you did and it caused PEM for you that would be strong evidence. The other things you mention don't seem be to that strong of evidence, to me.

 

[nandixon]

Have you ever taken any 5-HTP? If you did and it caused PEM for you that would be strong evidence.

Yes, I've taken 5-HTP (50mg). It causes me significant extra fatigue (drug-like) shortly after taking it (without actually making me sleepy) that lasts for at least 6 hours (if I remember correctly).

I'm not sure if it has a delayed PEM effect similar to what I get from physical exertion and certain foods. I wasn't looking for that possibility at the time I trialled it several years ago.

But in order for the PEM effect to occur, with respect to serotonin - if that's what's happening, it may require that the 5-HTP be endogenously produced, i.e., it may need a co-occurence of the various stimulatory and feedback mechanisms involved in, for example, the body's originally utilizing tryptophan in the first place.

For example, one of several things that has to happen, when serotonin becomes elevated upon exercising, is the mobilization of tryptophan by its liberation from albumin through adrenergic stimulation of free fatty acids. So right there multiple systems are involved. There are an incredible number of other possibilities.

I was thinking that elevated or dysfunctional serotonin levels could be as much a marker as a direct cause of the PEM.

Edit: Said in another way, the process of producing an excessive amount of serotonin may be more deleterious than the excessive amount itself. There might also be possible harmful downstream effects as the excess amount is metabolized, etc. (As I've mentioned on a couple other threads, though, I think a serotonin theory is likely only going to apply to a small subgroup of ME/CFS people.)

 

[PNR2008]

Most things written in this thread make a lot of sense to me. I have been trying to save my house for over six months which means form and letter writing, talking on the phone, looking for and mailing or Faxing papers. There has been help from a friend and my sister in completing forms on the internet and in organizing plus running errands, however the answers these organizations seek has to come from me.

Every time a question is answered or followed up, I think this is the last of it but it never is, hence the six months of grueling brain power drain.

Yesterday I had seven phone calls concerning this attempt to stabilize my life. Even though I took naps between phone calls and returning them, I was devastated and by evening I was too wired to sleep (a bad sign for me) so I did some banking at a near ATM and went to Dunkin Donuts at 1;30 AM, talked to the store employees like they were my best friends and returned home.

Of course today I am a dead fish, unable to move, make decisions or answer the phone. I am shaky, wired, sort of depressed and in pain. This will last all day and tomorrow I'll be worse. Twenty-seven years ago I used to be an expeditor, I can do the job during a crisis like giving mouth to mouth to a dying person but I will pay plenty for it in the future.

Now if I went for a short bike ride with my dog (can't because of snow and cold weather) I would come home happy, tired and have PEM for two days but it would never make me suffer like I am neurologically doing today.

Yet life must go on no matter how broken that life is.

 

[PNR2008]

Yesterday was the second day of the dreaded PEM and true to form it was HELL.

The pain especially in arms, legs and knees was a 10 most of the day, even after 2 Vicodin spaced out a few hours. I then had to take oxycontin because the pain would not break. That's before I used a massager and took an Epsom salt bath. I was to the point of yelling at God and the universe for this freaking disease that caused all this destruction just by using my brain under stress 2 days before.

Nobody would believe it unless they lived with me and witnessed this countless times. Today my sister is coming over to help me compose a letter yet to another government agency which I pray doesn't set me back. After this it isn't in my hands anymore and I will have to deal with the results of my pain induced efforts. Like I said previously I'd rather ride a bike.