I remembered today that I had Mono as a little girl. I remember my spleen being slightly enlarged for years. But now I wonder if there is a correlation between Mono and Fibromyalgia? I read an article today about a possible link between having Mono and developing MS later in life. Though my MRI’s have never shown any lesions, I do have a lot of MS symptoms. I also think I have CFS. But…maybe that’s the fibromyalgia? All I know is that I hurt and feel yucky every day. And every day my symptoms seem to be getting worse. Isn’t it strange that I want to be diagnosed with something other than fibromyalgia? Because other medical issues seem to have a treatment, and I want a diagnosis that has a treatment. I don’t want to feel yucky anymore.
Hi Freedom, I wasn’t familiar with the disease name, but reading up I see it’s caused by the Epstein-Barr-Virus (EBV), one of the viruses that some people feel may contribute to FM or autoimmune diseases developing (trigger rather than cause; like trauma/stress). In my case I suspect swine flu. There is no proof and it’s not any help, seeing as most people seem to get an EBV infection at some point in life… You want to have MS to give your suffering a sense of direction? 
- I’d prefer just my fibro back, not these unrelenting jab-sfx…
See here under C.1: Fibromyalgia References: Triggers, Symptoms, Treatments - & Hunting & Tracking them - #43 by JayCS
On a similar note tho: I’m finding that histamine intolerance (HIT) and now Mast Cell Activation Syndrome (MACS) explain my jab side effects very well and am trying all supp protocols for this and finding that helps. In the process am learning that these are co-morbidities - actually more with ME/CFS, but it fits to the fact that fatigue was getting more prominent anyway, whilst getting pains better under control. Interesting that quite a few of the supps I was already taking anyway for pain, fatigue, inflammation & antioxidation.
Getting back to mono, there aren’t any spectacular treatments for that which can help you much more than we know already: anti-inflammatory and anti-oxidant foods, leave unhealthy ones, and supps just a few general ones: omega-3 fatty acids, probiotic supplements, echinacea, cranberry & astragalus e.g. healthline…
What’s ME again. Mitochondrion something or other??? Effects? It sounds like you’ve had a miserable time with side effects. Ah! I’m going to have to look up MCAS. I get the histamine intolerance. My TSH level is low. My synthroid dose needs to be reduced. Still waiting for my doctor to get back to be about that. Also, my recent labs show that my WBC’s are smaller than normal which indicates that they are “ older” cells and that my bone marrow is not producing as many “ new” WBC’s. Have you ever had the Aldolase blood test? I haven’t. But it is a test used to check many things including polymyositis. I have some of those symptoms too. It believe I have Fibro. But I feel like there’s another component to my symptoms. 
Have you had an EMG or muscle biopsy?
ME is “myalgic encephalomyelitis”, the more medical sounding name for CFS, altho the myelitis part is actually not proven.
Can’t you stop taking the Synthroid immediately if the TSH is low anyway, or what else does it do?
White blood cells: Are you getting enough vitamins and minerals?
Polymyositis: I do have a certain leg weakness and I definitely have dysphagia. If I had it, I think my many blood tests would’ve shown it - not sure if aldolase, but the others (CK, LDH, transaminases).
But a diagnosis such as this would only interest me if it offers new & agreeable treatment perspectives, and all I can see is corticosteroids, that wdnt interest me the least…
May I ask what you are referring to when you say “jab side effects”? Just curious, as I get a TON of stabbing/jabbing pains in my feet and legs, especially at night. Not sure that is what you mean or not?
The doctor’s nurse emailed me and said my doctor said all my labs were ok. Mmmmm. I can’t stop taking synthroid. I have hypothyroidism. My physician would have to decrease the dose. Now that I think about it, my cholesterol is quite elevated. Mmmmmmm again. 
JayCS, when you said CFS, were you referring to Chronic Fatigue Syndrome? I know different names mean different things in other countries.
Hi Karen, thanks for asking me to clarify 
- I actually mean debilitating side effects from & since my jab, i.e. my first Pfizer vaccine, that I have been describing in detail here on my blog. It has probably caused a histamine condition, so I’m treating it like mast cell activation syndrome, which I think it may be and am having some success doing so (with supps & a bit diet).
As to your stabbing pains - I do get them occasionally, like in my thigh the other day trying my wife’s weighted blanket for an hour (and afterwards twitching for 1-2 minutes) . So I get what you mean, they can feel very much like knife jabs and hurt much more than needle pricks. Now I’m curious: Have you an idea what is causing and what to do about them?
Whilst some I spose are muscular, like the one I got from the weighted blanket others I think may be nerves, so I’d be trying magnesium malate or magnesium glycinate and various exercises, something like a TENS unit, as well as acupressure for both. Have you tried anything for it?
Hi Freedom, I’m a bit confused - your last labs are OK, but you’re saying TSH is low and cholesterol is quite elevated? 
Yes, CFS is Chronic Fatigue Syndrome - I always use the US/UK expressions, but actually it’s also called exactly that here in Germany.
Forgot to answer that one: EMG yes, several neuro-muscular tests (one very painful). Biopsy just from my lip to test for Sjögren’s, which was then negative. I think if the EMG stuff is OK, then a biopsy isn’t necessary.
Oh, now I get it, thanks for clarifying the “jab”!
Oh yeah, I’ve been getting the stabbing pains for a while now, some days worse than other days. Stabbing pain, stops, back again, stops. Sometimes it will go on for a few hours or once all night long! Diagnosed as neuropathy, along with my numbness and tingsling feet and toes, although I don’t have diabetes, so they say it’s ideopathic. They tried to prescribe Neurontin or one of those drugs, but I’d rather not until it’s only a last resort. I guess it’s just one more thing I’ll have to live with. I do also get restless legs really bad in the evenings, and I do take magnesium for that.
Thanks for your reply, I hope you find relief soon!
I totally get your reaction to our diagnosis Freedom. I cried because while i wanted to have a diagnosis, i was sad because there is little definitive about it and there are doctors that actually question it as a valid diagnosis. After many years of bizarre, fluctuating and sometimes overwhelming symptoms, I desperately wanted “it” to have a (respected) label and a specific treatment/management plan.
Thank you. I know it sounds crazy to want a different diagnosis. But my long term disability company, denied me coverage, because they stated people with fibromyalgia can work. This is different than social security. I appealed it twice and was denied twice. I even had a lawyer. I’m about to take the next step into this “ denial “ journey. I wish they could live in my body for a month.
Yep JayCS, you heard that correctly. Or read that correctly. My labs are abnormal but I was told they were normal. I can almost say I don’t trust or believe any doctors. I’m giving “ trying and believing and trusting “ them a break. When I feel physically and mentally stronger, I may do something about this by talking to that doctor. But for now, I’m tired of trying. I just need to take a break… I think.
VERY understandable. I was lucky that the public health officer together with one of my docs decided I can hardly work, but am trying for a time, and that I got another form of disability for having focal seizures, so a very handy 2nd diagnosis - who’d’ve thought…
Hi there Freedom , I was diagnosed with chronic fatigue syndrome or ME at Mayo Clinic based on a viral load that included Epstein Barr , and Kawasaki virus and 1 other other virus, I can’t remember at the moment. The way it was explained to me is most people clear a virus having no long term side affects. In Some individuals the virus can be triggered to go into an active phase , the shedding phase , the contagion stage ect either by being around someone else with the active virus or stress and illness. Similar to having chicken pocks as a kid and later getting shingles late in life . The dormant virus can be reactivated , causing a less severe case of the Epstein Barr or Kawasaki virus (that one causes hand foot and mouth disease ) This was several years ago but ME or Chronic fatigue syndrome and fibromyalgia were confirmed at Mayos Clinic. They actually have a week stay program on site clinic for individuals with ME ,to help you to learn to live with it . I have lymphocytic colitis , diverticulitis,hypothyroidism, severe gluten intolerance ( I’m not ciliac though) tons of allergies , multiple chemical sensitivity issues, severe chronic depression, . I Do not wish ME on anyone. I’m 49 and have been on s.s. disability for 4 years. It was not 1 single diagnosis that secured the disability approval rather the combination of dealing with all of these and the side affects the medications to treat these issues. In my search to find something to be provable as fibromyalgia is met with skepticism I was reminded by my rheumatologist that I never need to search for validation or something worse because fibromyalgia is bad enough it is a horrible disease with a inconclusive origin but it is ENOUGH. I say this with kindness to anyone looking for answers more than this elusive disease provides , it is ENOUGH, ALWAYS BE AN ADVOCATE OF YOUR OWN HEALTH BUT NEVER DOUBT THAT FIBROMYALGIA is a devastating disease in and of itself. As survivors we owe our selves the validity of knowing this .
Hi Jse123, Thank you for that information. I tried to get into Mayo Clinic but was not accepted. They stated that I can see doctors with my symptoms where I live. I see my rheumatologist at the end of February. I made the appointment in September. When I moved, I had to get new doctors. It’s to the point that I have stopped caring??? Or trying??? If I die, I die??? I’m not talking about ending my life at all. I have yet to have any doctor invest in my health. I had recent labs that are abnormal. After messaging my PCP 2 times, I got a message from a nurse that said my PCP said all my labs are fine. I feel worse every day. I want to scream “ please, won’t someone help me?” I’m also getting weaker.