Severe fatigue but not pain -- do I still have ME/CFS?

[Artemisia]

I have been sick for nearly a decade but only recently got a CFS/ME diagnosis. I have disabling fatigue and am unable to work even from home, but I still have some doubts as to whether I truly have CFS or there is something else going on.

I have the hallmark symptom of CFS: post exertional malaise. However, my PEM is worse fatigue and muscle weakness, not flulike symptoms or pain.

In fact, I only rarely have flulike symptoms of body aches or generalized pain (once a month, if that). I do have pain in specific joints, but those are from injuries. For example, I have carpal tunnel syndrome in both wrists and an SI joint injury. So I do not have generalized muscle or allover joint pain like some people with CFS have. I do sometimes have swollen lymph nodes.

I have some cognitive symptoms, including trouble concentrating and with memory. But those symptoms are not severe. Also, frequent headaches.

My condition was gradual onset.

Other symptoms include massive weight gain and very irregular periods. This sounds like it could be hypothyroidism, but my thyroid levels are always within normal ranges, and I react with anxiety to thyroid medication, even combo drugs like Armour or T3 only.

I have a 10 minute standing tolerance, due to my back muscles suddenly feeling so weak that I will collapse. So, like other CFS patients, I can't stand up very much, but it seems like it's for different reasons than other CFS patients? I haven't read other people complaining about not being able to stand from rapidly fatigued back muscles.

I meet the diagnostic criteria for CFS. But sometimes I wonder if I should focus my energy researching somewhere else, because I read accounts from other patients, and they seem to have a different experience than me (especially the generalized pain and flulike symptoms). I don't expect the doctor who diagnosed me to have a nuanced understanding of this condition. For example, he prescribed me 50 mg of naltrexone instead of the typical 1 - 5 mg, so I don't feel I can trust him to have many answers.

Thanks for any insights!

 

[jesse's mom]

I have heard of lots of people who do have ME/CFS and do not suffer with pain. Yes, you are correct that low dose Naltrexone is usually 2.5 mg.

Are you planning on taking the 50 mg?

 

[Artemisia]

I have heard of lots of people who do have ME/CFS and do not suffer with pain. Yes, you are correct that low dose Naltrexone is usually 2.5 mg.

Are you planning on taking the 50 mg?

I diluted the 50 mg of naltrexone and am taking only 2 mg. The doctor scoffed at me when I told him I was doing this, and he again told me I needed to take the 50 mg. So I am assuming he doesn't really know what he's talking about. He also told me that antivirals don't work (after refusing to run any lab tests for viruses).

 

[Wolfcub]

I have been sick for nearly a decade but only recently got a CFS/ME diagnosis. I have disabling fatigue and am unable to work even from home, but I still have some doubts as to whether I truly have CFS or there is something else going on.

I have the hallmark symptom of CFS: post exertional malaise. However, my PEM is worse fatigue and muscle weakness, not flulike symptoms or pain.

In fact, I only rarely have flulike symptoms of body aches or generalized pain (once a month, if that). I do have pain in specific joints, but those are from injuries. For example, I have carpal tunnel syndrome in both wrists and an SI joint injury. So I do not have generalized muscle or allover joint pain like some people with CFS have. I do sometimes have swollen lymph nodes.

I have some cognitive symptoms, including trouble concentrating and with memory. But those symptoms are not severe.

My condition was gradual onset.

Other symptoms include massive weight gain and very irregular periods. This sounds like it could be hypothyroidism, but my thyroid levels are always within normal ranges, and I react with anxiety to thyroid medication, even combo drugs like Armour or T3 only.

I have a 10 minute standing tolerance, due to my back muscles suddenly feeling so weak that I will collapse. So, like other CFS patients, I can't stand up very much, but it seems like it's for different reasons than other CFS patients? I haven't read other people complaining about not being able to stand from rapidly fatigued back muscles.

I meet the diagnostic criteria for CFS. But sometimes I wonder if I should focus my energy researching somewhere else, because I read accounts from other patients, and they seem to have a different experience than me (especially the generalized pain and flulike symptoms). I don't expect the doctor who diagnosed me to have a nuanced understanding of this condition. For example, he prescribed me 50 mg of naltrexone instead of the typical 1 - 5 mg, so I don't feel I can trust him to have many answers.

Thanks for any insights!

@clairesam

I am sorry you have all this fatigue etc.

It still could be ME/CFS for you....I don't know. Or some other issue that may take a while and some tests to diagnose?
It sounds (rationally!) as if you don't have much confidence in your doctor. Is there a chance of switching doctors? Then laying out clearly to him/her all the symptoms you are feeling?

ME/CFS does generally appear to be a condition of eliminating all the "other things it could be" first.

I don't have a definite CFS diagnosis yet, but have many things very much in common with CFS. In my case it seemed to be a post-viral syndrome as it started suddenly with a viral flu-like thing in Spring.

I also never had swollen lymph nodes or generalised joint pain but like you, have time-limits when it comes to too much standing. That is not from POTS, but simply from a dysfunction in sacro-iliac joint which has troubled me on and off since 1997. Walking (oddly) is easier. That does come and go too, and it worse, the more tired I am. I do get little bits of pain here and there but not much to worry about.

Weakness....yes. I do get that usually when I relapse. And a few other symptoms then. But have days when I am not too bad!

I got recurrence of flu-like symptoms more markedly in the first 3 months. I can get them now but they are rarer. I got them for 4 days after a CT scan. That might have been sensitivity to the radiation or EMFs.

See what tests turn up for you. Eliminate all the possible issues first. But you will need a co-operative doctor.

You could still have CFS but there are many degrees of that.

 

[Artemisia]

I've had tons of tests done to rule out other diseases, including Cushing's testing and that's ruled out. I've been seeing a rheumatologist who found that I am ANA positive and have high ESR and CRP, but many people without autoimmune diseases have those, so it doesn't necessarily mean I have an AI disease.

It's taken me years just to find a doc to prescribe naltrexone so I don't have high hopes of finding any better docs. I've been to soooo many over the years and most are just worthless. But maybe someday.

 

[Heartl]

I have had ME/CFS for at least 25 years and rarely have pain. For me I feel sick, weak, extremely fatigued (not always). I sometimes will get migraines and burning spine but usually only when I pushed myself too hard.
I have POTS so can’t stand too long. For me I’ve had POTS before and gradually it went away for a few years and now it’s been back again for almost a year.
My advice would be to be gentle with yourself and rest as often as you can. Also for me I changed my diet (no sugar, gluten, or dairy), that made the biggest positive change in my health and energy level

 

[jesse's mom]

He also told me that antivirals don't work (after refusing to run any lab tests for viruses

I get that sort of stuff a lot! So he just wants to shut your opioid receptors down so you will be more exhausted and can't suck any joy out if life? IMO

 

[Dechi]

Not everyone has pain and/or flu like symptoms. I do have pain but it’s from fibromyalgia, not ME. Flu like symptoms I have also, but it’s not one of my main symptoms.

 

[Seven7]

not flulike symptoms or pain.

I didn't develop those till long time after being sick, and I only experienced flu like sysmptoms for a while, I don't this days. I do have pain but not the ME muscle pain.

 

[Rlman]

i think one can have anxiety from taking Armour or T3 only if one has low cortisol. when i tried a small does of Armour i was shaky/anxious but when took it months later while on hydrocortisone 20mg i did not feel shaky/anxious. high ESR/CRP/ANA at least shows you have some inflammatory condition probably, so perhaps that could be affecting your energy levels? hope LDN is helpful. have you ruled out food sensitivites/leaky gut, mold, lyme, teeth cavitations, heavy metals?

 

[taniaaust1]

Other symptoms include massive weight gain and very irregular periods. This sounds like it could be hypothyroidism, but my thyroid levels are always within normal ranges, and I react with anxiety to thyroid medication, even combo drugs like Armour or T3 only.

You may have PCOS.. PCOS people also have issues with weight gain. If you have not had it done already, get yourself the tests you need to rule that out eg an ultrasound of my ovaries were done to find the typical "string of pearls" effect found in PCOS.. My PCOS got missed for a very long time and its important to know as it gives you high risk of other things.. eg diabetes or insulin resistance among other things.

PCOS may be missed in ME/CFS as the ME/CFS can change the hormonal issue often found in PCOS of the higher testosterone they look for to aid in diagnoses as ME/CFS often causes issues with low testosterone.. so my previously high testosterone with the PCOS is now low testosterone due to the ME. So dont allow them to not give you a PCOS diagnoses based on not finding high testosterone if the PCOS "string of pearls" is found on scan.

80% of those with PCOS will be diabetic or have pre-diabetes by the time they are 40. If it turns out you do have PCOS, you then should see someone knowledgable in this and have a 2hr glucose tollerance test done to find out if you have hyperinsulinemia or not. That issue can cause a lot of symptoms but most doctors are unaware of this. I find my hyperinsulinemia makes me more tired and can actually give me a sore throat (immune flare up) if I eat wrongly in regards to it.

I have a 10 minute standing tolerance, due to my back muscles suddenly feeling so weak that I will collapse. So, like other CFS patients, I can't stand up very much, but it seems like it's for different reasons than other CFS patients? I haven't read other people complaining about not being able to stand from rapidly fatigued back muscles.

I have not heard ME/CFS people complaining about that either.. usually if someone has very weak back muscles, they will also be having issues with sitting. or I get a feeling like jelly legs due to the OI or just dizzy when Im standing so need to sit. Have you ever been to a good chiro and had scan done on your back to see if they see any issues?

I meet the diagnostic criteria for CFS. If you met a good diagnostic criteria such as the Canadian one.. you probably do have ME/CFS but its always good to stay open to other ideas if you find other things which fit.

 

[hangininthere]

I didn't have CFS pain the first 27 years of CFS, from age 18 to 44.

Then at age 45 I went way downhill and became bedridden and got the flu-like CFS pain and extreme debilitating fatigue and brain fog and orthostatic intolerance to this day at age 65.

Patti

 

[Wishful]

I had perceived (not physically-caused) muscle aches, and still get those when I have PEM. Otherwise, no pain from ME. BTW, from the definitions I've read, ME was defined as CFS with PEM; CFS doesn't include PEM. It's important to rule out other possible medical problems, but ME patients vary greatly in which symptoms they exibit and to what extent, so don't worry that you don't exactly fit someone else's symptoms.

LDN was very effective at blocking my muscle aches. I no longer need it, but it was very useful for a year or two. The optimal dosage is fairly narrow, so you need to experiment with it. For me, the minimum does was 2.25 mg sublingually. Less than that had no effect. Over 5 mg it also stopped being effective, so quite a narrow effective range. 50 mg is not low-dosage; it's regular dosage, which has a different mechanism and is intended for a different medical problem.

Taking LDN sublingually requires about 30% less, if you want to save money and/or reduce potential side-effects from the drug. For me, I found that the effects of one dose lasted over 36 hrs, but less than 48, so I alternated morning and evening, which maintained full effectiveness. I really try to minimize drug use. If you search this site for LDN, you'll find some threads about dosage and other issues. Some people need to start with very tiny doses (mcg) and work up to larger doses. I had no problems starting with 4.5 mg.

As for the thyroid issues, there are others in this forum who can provide better advice. Search for threads involving 'thyroid'.

You'll also find that we're all different regarding what works for us. Some people's effective treatments make my symptoms worse. I have two treatments (T2 and cumin) that work reliably for me, but not for anyone else (so far). The same holds true for foods or activities.

From what I've read here, antivirals work for a minority of patients with quite specific conditions (how it started, they have large numbers of inactive viruses, etc). Other patients have gone through lengthy and expensive antiviral treatments with no benefit. It's certainly not a 'works for most patients' treatment.

My advice is to keep a food/activity/symptoms journal. That will help identify foods and activities that affect your symptoms. Trying to do that from memory doesn't work. My journal has been very useful for me, and it probably saved my life (identified something that induced strong suicidal moods). In addition to that, simplify your diet and activities to limit the things that might have caused a change in symptoms. I've had to eliminate lots of foods, but that has helped me to avoid triggering worse symptoms. Sometimes things that I've identified as being safe stop being safe, so watch for that too.

Experiment, and have patience. It took me many years to discover that T2 would help (but not T3 or T4), and 16 years to discover that cumin could block my PEM. It's not a quick or easy process, but it is possible to find things that can improve your quality of life.

Oh, one other warning: ME seems to adjust to treatments, so you may find that some drug or supplement reduces your symptoms the first few times you try it, but then stops working and never works again. That's discouraging, but just another fact of ME. Keep on trying...

 

[jesse's mom]

I find my hyperinsulinemia makes me more tired and can actually give me a sore throat (immune flare up) if I eat wrongly in regards to it.

OH! I need to get that checked into! Thank you!

 

[Artemisia]

Thanks for all the response so far. I'll write more later, but for now I have a question:

Does increased fatigue and weakness (without increased pain) qualify as PEM? I read something that claimed PEM meant flu-like symptoms and pain. My PEM is feeling too weak to raise my arms and needing to rest for hours or days. Would that be considered PEM?

 

[taniaaust1]

Thanks for all the response so far. I'll write more later, but for now I have a question:

Does increased fatigue and weakness (without increased pain) qualify as PEM? I read something that claimed PEM meant flu-like symptoms and pain. My PEM is feeling too weak to raise my arms and needing to rest for hours or days. Would that be considered PEM?

Think of PEM as like a complex of symptoms which come into play after activities. You may be stopping activities due to exhaustion or due to another symptom you may be getting stronger before the pain actually flares. eg with me depending on how bad my OI is being.. that can often stop me doing things due to head symptoms eg pressure/dizziness or just from having jelly legs and going to fall down before the pain flares.

 

[hangininthere]

I consider the weakness without pain to be PEM.

I get limp as a wet noodle and bedridden with PEM ever after my CFS got way worse at age 45.

My orthostatic intolerance makes me weak in a different way than the exhaustion from too much physical or mental exertion, too.

I especially hate when my body is rested up enough to drag myself up to get something done, but my brain fog won't let me think straight enough to do it. So there I lie, laid out flat anyway.

Taniaaust1, I recently discovered from a tip on Orthostatic Intolerance from a member here, that wearing a back brace tight can keep the blood from draining from our head down to our legs as OI does to us. I discovered a tight elastic belt works, too. Most of the time I go out to kitchen to grab something to eat and can't think straight and have to dive right back into bed still hungry. When I remember to put the tight belt or back brace on, I can successfully get myself something to eat much more easily. I wear the tight elastic belt when shopping too, helps my OI a lot, makes a big difference. If I'm physically rested us for the task, that is. When I haven't had enough rest, nothing works for the store, then need my portable stool if a store electric scooter isn't available
.

As Wishful mentioned, I've tried different supplements and other things throughout the years and my pain and length of PEM have much improved in recent years.

My PEM used to last for three weeks every time and constant pain, but is now down to a week of total bed rest and pain not bad like it used to be, just an all over vague soreness that I'm used to. Rarely get bad pain with it now, but sometimes do. My upper arms will throb. Then I rub Lidocaine cream on them and it helps me rest more comfortably.

The flu-like pain the first six years after age 45 when the pain started, that caused me to feel suicidal and I had to stop myself from planning it ever after since that was getting too close even though it was 'just' suicidal ideation, has improved, starting with discovering good old aspirin. Advil didn't work, but finally aspirin did.

Aspirin also helps my brain fog and exhaustion at times, too - I think because it takes down inflammation around the brain and spinal cord that makes we weak (just guessing from a theory I read years ago).

As Wishful mentioned, I've found that some foods and artificial sweeteners cause me depression. Some supplements, too. Such as eggs if I eat them more than three days in row, the supplement Cat's Claw, and one of the artificial sweeteners from long ago, I forget which one, it wasn't aspartame though.

And some things that worked for a while stopped working. And some things that didn't work at first try will work on a later try, such as supplements and diet changes.

I think there are varying degrees of CFS symptom severity, just like there are varying degrees of Attention Deficit Disorder and Tourette Syndrome symptom severity.

Not all people have every CFS symptom, either.

Plus, of course, always research to see if you have something else along with the CFS. We can have multiple health problems contributing to our symptoms of fatigue. Such as, I have four fatiguing illnesses and disorders. What a heavy load of fatigue and exhaustion to bear - CFS, Bipolar Depression, Attention Deficit Disorder, and Tourette Syndrome.

Patti

 

[Wishful]

I'd accept increased fatigue and weakness as PEM. Increased pain isn't essential. We're all different. I'm part of the subgroup that doesn't suffer from physical limitations (endurance, strength) that is considered a major part of ME for most victims.
There also seems to be variability for the time delay for PEM symptoms. A consistent 24 hrs is common, but others get it quickly or with variable delay. My physically-induced PEM delay is a consistent 24 hrs, but my cerebrally-induced PEM is variable and can show up in less than an hour. Time delay of PEM isn't useful for determining whether it's PEM or something else. Neither is duration of PEM, since that varies from hours to weeks or even longer for some victims.

 

[Heartl]

Thanks for all the response so far. I'll write more later, but for now I have a question:

Does increased fatigue and weakness (without increased pain) qualify as PEM? I read something that claimed PEM meant flu-like symptoms and pain. My PEM is feeling too weak to raise my arms and needing to rest for hours or days. Would that be considered PEM?

In my experience yes

 

[Artemisia]

I get that sort of stuff a lot! So he just wants to shut your opioid receptors down so you will be more exhausted and can't suck any joy out if life? IMO

LDN makes one more exhausted and joyless?