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

[Artemisia]

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.

Thanks for all the info!

I have had an MRI and ultrasound of my pelvis. The GYN says I don't have PCOS.

But she did diagnose me with paraovarian cysts. They're big. One's 8 cm and one's 5 cm. She says they're simple and benign. Because they are outside the ovary, they're not contributing to my symptoms of pre-diabetes, high insulin, weight gain, etc (or so she says).

But she says I can choose to remove them via laparoscopic surgery if I want. According to her, the only advantage to surgery would be making sure they're gone / peace of mind / avoiding follow up ultrasounds every 3-6-12 months to make sure they're not growing or becoming problematic.

I honestly don't know what to do. I've gone back and forth on surgery. I don't want adhesions or other complications post-surgery. I also have A LOT of abdominal / pelvic fat which can make surgery more difficult. I wouldn't want her to make a wrong incision because it's hard to see and move around at the surgical site.

It's been a few years since I did the glucose tolerance test; I'll ask for a new one. But what can they do for hyperinsulinemia? Just Metformin or birth control pill right? I don't want the BCP and Metformin makes me super weak and fatigued, so I don't know what else I can do but continue eating healthy which doesn't seem to make any impact.

 

[Mary]

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

I don't have pain either, but I definitely have PEM - Mine hits some 20 - 24 hours after exertion, whether physical or mental. It used to last 2 - 4 days, where I could literally do nothing (maybe open a can of soup to eat) until it passed, now it's often over in 1 day since (1) I know my limits better and (2) I started taking branched chain amino acids (4000 to 5000 mg a day) about 4 years ago. My PEM takes the shape of bone-deep exhaustion, and a lactic acid feeling of burning in my legs. When the burning finally passes, that's when I know it's safe to move around again. But the few times I've pushed myself before the crash had full lifted, I paid dearly for it.

My ME/CFS onset was very gradual, over many years. But once I started crashing, it's been very consistent.

Yeah, 50 mg. of naltrexone is what is used for people who are coming off of opioids or alcohol. Your doctor knows a little, but a little knowledge can be a dangerous thing! It's good you have educated yourself on this. This website has a lot of info on ldn and many people on this board can help you with low dose naltrexone. I tried it and I couldn't tolerate it. It made me very spacey such that I had trouble functioning. And this was at a very low dose, maybe 0.75 mg., I can't remember, but very low. But it has helped many other people so it's definitely worth a try.

I don't seem to have the cognitive issues - brain fog - others have either, BUT - excessive mental exertion does makes me crash - go figure!

So we're all different but I think we're all pretty much the same as far as PEM - a substantial worsening of symptoms after exertion, which can take days or weeks to recover from.

 

[jesse's mom]

LDN makes one more exhausted and joyless?

No a low dose .5 to 2.5 is the most common dose. That does not do the same thing as a higher dose that treats addiction. They patented Naltrexone to block opioid receptors in the brain. So a low dose for us, ms and a vast array of other illnesses LDN can make mood better and help with pain and autoimmune and inflammation. I can't get a Dr to prescribe it for me here... yet. Things are starting to change. I am seeing articles about LDN and all the things it treats more and more.

 

[Wishful]

My doctor had no reservations about prescribing LDN for me. He had prescribed it for another patient with some other disorder, but the main thing was that he considered it such a low dosage that the potential for negative effects was trivial. Maybe it would help if you pointed your doctor to some appropriate information on LDN. Preferably something short and concise, with links to more detail if he wants it.

LDN's blocking of my muscle aches did make me more exhausted...because I felt well enough to go for multi-hour walks. Sure boosted my mood too, going for those walks in the woods.

 

[wonderoushope]

The most obvious PEM for me was after doing 45 min of intense exercise and then crashing and not being able to get out of bed for about 3 days. Then a week or so later, I was bending down and just hammering a few nails into a unit and all my body muscles ached for about a week and a bit which was a long time to recover for just hammering some simple nails into a unit and bending down.

I guess I have PEM now but it's not as obvious to me as the above example. I don't really do exercise now to compare, but now I just get tired from doing something like the dishes and need to sit down right after it.

 

[Wishful]

For me, it's the unusual physical activity that triggers PEM. Even strenuous activity doesn't trigger PEM if it's the actions my muscles are used to doing. A few minutes of straining those muscles differently is enough to trigger PEM. Three hours hike or bike ride: no PEM. Climb a ladder once (straining those leg muscles past the hike/bike limit): PEM. Spend less than a minute washing a window above me (straining those arm muscles): PEM.

So to me, bending over and hammering a few nails is a reasonable trigger for PEM. If you're really interested (and maybe a bit masochistic ), you can experiment with activities that use your muscles past their normal limits for short periods, and see which ones trigger PEM. I was satisfied with the results of accidental experiments.

 

[wonderoushope]

@Wishful with plenty of pacing and a strict diet I was much better. I did a similar thing about 6 months later with banging nails into a unit and was fine. However, my health is on the decline again so I am assuming I have to be careful. Only a few months ago I was doing a similar thing and I was fine (maybe though for me I just get more larthargic throughout the day).

For me my fatigue is now at a place, where I am just not that energetic or motivated throughout the day, but not bed bound. So hammering nails now might just set me back with fatigue rather than muscle pain. But the fatigue is not so noticeable for me, as it has become like second nature for me so most of the time I just feel lazy...if that makes sense?

 

[Wishful]

ME changes over time. I had one period, lasting weeks, where certain types of activities made me start to black out. Then it went away. It did return once, but then stopped again. My energy levels have changed over the years too. I've recently discovered that something (still not sure what) can trigger a lessening of energy and increase in muscle aches, making my walking stride short and slow. Something else (BCAAs or arginine most likely) switches me back to more energy and brisk stride.

Maybe the nail-banging PEM one time and not the other was due to something in your diet (too much or too little), which made you more sensitive to the chemicals released by that activity. Some foods and spices or supplements affect my PEM response. Figuring out what does it takes time and careful recording and looking for correlations.

I say I'm not lazy, I'm just more aware of my limitations.