I definitely have PEM, does that mean I have ME/CFS

Hey guys this is my first post.

I post this here because for 3 years now I definitely have been having PEM flares that go on for about 20 days after I perform even the slightest exertion. That could mean walking longer than 10 minutes or carrying a heavy grocery bag. The flare starts gently after about a day and peaks at day 8 (always exactly the same and I can't explain this). During the flare I will have extreme irritability and mood swings, fatigue, lying in bed with chills and heavy brain fog. It's basically about the same as having the flu.

When I'm not in the flare I have relatively "normal" energy-levels and sleep. The only thing I do have chronically is heavy IBS-C, SIBO and leaky gut (which started very shortly after my first flares). I basically need to follow an extremely restricted diet (with zero carbs) and make sure to not over-exert myself to keep my body & mind stable.

For these past years I've only been looking into IBS, SIBO etc but never considered looking into ME/CFS because I always assumed you'd need to be chronically (i.e. always) fatigued, whereas I only have the heavy fatigue during flares and sometimes I go weeks while avoiding flares. Because of the randomness of the flares, however, I don't have a job anymore and I am at home on wellfare.

I now want to do anything I can to figure out what's wrong with me and have been to several doctors but my bloodwork always seems to come back fairly normal and my situation remains a big mystery to every doctor I've seen (safe for the diagnosis of IBS). Thyroid and auto-immune panels come back normal. I did have Epstein Barr virus some 15 years ago and Giardia infection 10 years ago.

Do I have ME/CFS or not in your opinion and how can I get a hard diagnosis for it?
thanks
Sam

 

Thanks @PatJ
It might seem unusual. Then again, I do realize now that I have to drink coffee all day long just to have enough baseline energy to move around the house. I also need to not make any single diet mistake or miss any of my crucial supplements, which are macrogol and magnesium to avoid constipation (constipation, which triggers super low moods/energy) and L-tryptophan. L-tryptophan gives me a much needed minimum serotonin baseline (without it, I tend to just lie in the couch and stare at the walls at best, or lie in bed totally depressed at worst).

I currently take daily:
- 10,000 IU vitamin D
- 1,000 mg L-tryptophan
- 750mg vitamin B3 + 5mg vitamin B6
- 750 mg vitamin C
- 20mg zinkpicolinate
- 2 x 450mg magnsium citrate
- 2 bags of macrogol/movicol
- Probiotics (6 billion units of mix of Lactobacillus rhamnosus GG + Bifidobacterium lactis Bb12)

I'm getting baking soda next, so I can do the stomach acid test, since I definitely recognize those symptoms you mention.
Thanks for the tip!

 

Do you fit in the Canadian Consensus Criteria ? That’s the first step to know if ME might be what you have. Next you need to rule out other similar illnesses. Check the CCC for details. It’s a long and tiring process but it has to be done.

 

In the early years of ME nearly all people react badly in various ways to red wine. You could try drinking a glass and see what happens.

 

Just curious, why would people react badly to red wine in particular? Red wine contains a high level of antioxidants, and it seems lot of people have antioxidants as part of their CFS supplement regime.

 

@PatJ I did the baking soda test this morning and did not burp for 10 minutes. Will do the test again over the next days. What does this mean in the context of ME? Not sure how I should proceed.

@Dechi let's see:

1. Fatigue: yes.
2. Post-exertional malaise and/or Fatigue: very much, yes
3. Sleep Dysfunction: yes, but mostly during a PEM flare. Footnotes say that not all ME patients have this, especially when having an infectious cause for ME. I had EBV some 17 years ago and a bad case of Giardiasis 10 years ago. Not sure yet whether these are the cause.
4. Pain: Not really (yet?).
5. Neurological/Cognitive Manifestations: very much yes, and especially pronounced during PEM.
6. At Least One Symptom from Two of the Following 3 Categories:

* Autonomic Manifestations: Orthostatic intolerance (mild), irritable bowel syndrome (very advanced, cannot produce bowel movements without at least 2 daily bags of movicol/macrogol and daily 900mg magnesium); urinary frequency (yes)
* Neuroendocrine Manifestations: cold extremities (yes); intolerance of extremes of heat and cold (yes); loss of adaptability and worsening of symptoms with stress. (yes to both)
* Immune Manifestations: general malaise (yes during PEM's), new food sensitivities (yes, I can only digest a few vegetables and some fish anymore, nothing else).​

1. The illness persists for at least six months (yes)
​

Not sure if this makes it conclusive ME, since I'm not suffering from pain per se. But then again I have been living within a very strict energy envelope for years now. I have no job so I avoid all stress and I stay as sedentary as I can to avoid PEM triggers. I leave the house only once every 2 weeks for grocery shopping and even then I'm extremely careful about carrying weight. If I wouldn't take these measures I would be a constant total bed-bound wreck.

ps this long and tiring diagnosis process. Which one are you referring to exactly (link?). I want to make sure I'm on the same page.

I have already ruled out hypothyroidism, Hashimoto's, Lyme's and colon malignancy.

@Countrygirl YES! Haven't been able to touch red wine for 5 years now. In the end, even a single glass would produce a hangover the size of which I used to have in college after drinking all night long.

 

Sounds like M.E to me. A lot of us also have SIBO, IBS gut dysbiosis etc. Some of us dont have significant pain.

 

@Learner1 thanks so much for elaborating on all this. I look forward to starting a comprehensive protocol for my gut now. I had tried some things left and right over the years, but never a structured program. I have always consulted classic GP's about my issues (to no avail). I will now seek out a function medicine doctor as you suggest.

Cheers @PatJ. I will definitely try Betain HCl + pepsin now after reading up on things. I've heard good things about the book: "The Gut Health Protocol", which is supposed to cover all bases when it comes to intestinal issues. I want to go through that next (unless someone specifically warns against it of course).

ps had indeed just discovered Hip's roadmap. Excellent resource.
I wonder though if there is an all encompassing resource out there that gathers all this information plus the anecdotal evidence such as what you've been telling me about betaine Hcl + pepsin helping you out so much. Stuff like this doesn't seem to be on the roadmap (probably by design)? Would be great to have a totally comprehensive flowchart out there which covers all possible things you should try.

 

@sam.d you definitely fit the criterias. Pain is not mandatory. A lot of PWME don’t have pain. Most have headaches, or migraines, or paresthesia, which are types of pain.

As for ruling out other diseases, there is a section in the CCC about it. I believe @Hip also has put together a very nice document to help you with that.

 

You sound a bit like I did. I feel like I am chatting with myself from the past.

I would say... almost definitely... you have SEID (Systemic Exertion Intolerance Disease)... ie ME. I didn't have IBS, I had Cronh's diseases... but the problem was... I kept thinking that if I managed the Cronh's... that the crashes would dissapear. It wasnt until 5 years later... my endocrynologist set me straight... The ME really is its own animal... and what causes my Cronh's to flare-up is not at all what causes ME to flare-up. My Cronh's is mostly in remission at the moment... but like everyone else here... if I exert myself... I get PEM.

Remember that for the most part... there is still no blood work that can identify ME. There is only the PEM to identify it. That is why the 24 hour CPET test is the only way to truly test for it.

I also had the exact same issue with the randomness of the flares that made it impossible for me to work. One day I was feeling ok.. and was programming away (I'm a programmer )... the next day... I was in a dark room shaking... thinking that I never wanted to speak with the outside world again. This randomness is what killed me. But the good news is... once you cure the randomness... you can get some sanity back.

I would suggest Pacing with a Heart-rate monitor. Also... I would stop any and all social gatherings. (This is a toughie... but talking can be worse than walking). Once you do this... you can start to fine-tune your life.... there are lots of great strategies that help.

 

@hamsterman thanks! I'm in the same boat and recognize what you say (the randomness etc). It's only been a week since I "discovered" ME/CFS. Until last week, the physical degradation which I had been suffering from for more than 20 years was just a big mystery. I realize a lot of people on here are experts at ME/CFS and still haven't been able to achieve remission, which should really make me more pessimistic. Instead, I haven't been this excited and happy in years. That will probably subside in time, but it's been a blast discovering all you people who are finally pulling the curtains off of my illness. Not to mention discovering all kinds of symptomatic treatments which where hitherto unbeknown to me.

But yeah, as far as timeline, I've quit all social life almost 2 years ago, I've stopped leaving the house about 9 months ago (except for grocery shopping once every 2 weeks). So I've been extremely carefully pacing to combat randomness.

 

@sam.d That sounds like ME to me, but other conditions can produce some of those symptoms. What you need, imo, is a thorough work-up and diagnosis by an ME specialist if at all possible. It would be tragic if you had a treatable condition that went undiagnosed and you suffered unnecessarily for years. Often GPs miss diagnoses in people with ME-like symptoms because there are so many things going wrong. Or perhaps I should say they often misdiagnose. Either way, a GP is not usually the best first stop for a diagnosis.

Since you are in Belgium, I would suggest you go to Kenny DeMeirleir in Brussels. At this point you don't need to concern yourself with whether or not you like his treatment plan. He does thorough testing and will give you a diagnosis. At that point you'll have some idea how to move forward. Maybe that will be with DeMeirleir, maybe not. You don't have to decide that now.

If you have treatable conditions that are not ME, you can find doctors who will treat them. If you do have ME (which sounds likely), you'll have lab data and can start researching how best to get treatment for your symptom set. Since there is no cure for ME, treating symptoms is our current option. As many of us can tell you, getting symptoms under control (gut, sleep, autonomic dysfunction, immune dysfunction, etc) can make a huge difference.

Keep us posted on how you are getting along.