What Were Your First Symptoms of ME/CFS?

[Patty May]

My first symptoms that took me to the family Doctor numerous times were horrible migraines, and exhaustion to the point I simply couldn't get out of bed for several days. I felt so horrible I would go see him and end up crying uncontrollably when trying to describe my headaches and exhaustion. He of course thought I was "just depressed".
That was the first of many, many Dr.s that prescribed antidepressants! A few actually helped!
The next were leaden, painfull legs, and muscle tension. IBS was a problem since my teens, but it got unbearable - many trips to the ER. All this was 29 years, and the symptoms just kept on coming and going.
Diagnosed with CFS and Fibromyalgia in about 1987. Symptoms wax and wane over the years, but haven't felt healthy since the first headache.
Thank you so much Cort for this forum, I learn something every day, it gives me hope. Wishing good days to all.

 

[Cort]

Just did the survey.... good questions! I am curious though: Anyone else out there who is more recently diagnosed (5 years for me) but suspects now that maybe they've been relapsing/remitting for closer to 20 years? I had a viral onset with a bad respiratory infection 5 years ago. I was sick for over a month and my GP was thinking maybe it was pneumonia. Then BAM! I hit rock bottom and could barely move, and I also developed POTS. After about 8 months of seeing various local specialists they decided on ME/CFS.

However, in thinking about "early symptoms", I would say that I had digestive problems that started all the way back in the late 90's, but were ignored by doctors. Starting with a dairy intolerance, which then led to soy intolerance, and then eventually a gluten intolerance. Coupled with that, I also had many traumatic spinal injuries in the 90's -- back injuries, whiplash(s), concussion(s) from working with horses, and also from some minor car accidents. There seemed to already be some sort of malfunction in that ALL these injuries seemed to heal much slower than they should have. (And I also recovered from surgeries much slower than usual.) In 1995 a doctor noted that I had a high T cell count and "possible autoimmune", but neglected to tell me --- I happened across it in my medical files recently. In addition --- I've always had kyphosis, and super tight muscles -- which totally falls in line with Dr Peter Rowe's findings.

I should also mention that I've had mono twice: Once in high school and once in college. Struggled with recurrent tonsillitis throughout childhood. I was the one who was always getting sick, and when I got sick - it lasted a week or more instead of just days. As you said, Minx, dialing back the clock 20 years is difficult --- but it really makes me wonder about patterns in ME/CFS. On paper my record shows I've been ill for 5 years. I think a closer look might reveal a much earlier onset - by decades!

OMG - they should study you.

I think you're a classic case - TWO cases of mono! (You're only supposed to get it once! ); recurrent tonsilitis as a child (unable to fight off infections easily), gut problems, traumatic injuries, tight muscles - I think you were a subset of ME/CFS waiting to happen.

 

[Cort]

My first symptoms that took me to the family Doctor numerous times were horrible migraines, and exhaustion to the point I simply couldn't get out of bed for several days. I felt so horrible I would go see him and end up crying uncontrollably when trying to describe my headaches and exhaustion. He of course thought I was "just depressed".
That was the first of many, many Dr.s that prescribed antidepressants! A few actually helped!
The next were leaden, painfull legs, and muscle tension. IBS was a problem since my teens, but it got unbearable - many trips to the ER. All this was 29 years, and the symptoms just kept on coming and going.
Diagnosed with CFS and Fibromyalgia in about 1987. Symptoms wax and wane over the years, but haven't felt healthy since the first headache.
Thank you so much Cort for this forum, I learn something every day, it gives me hope. Wishing good days to all.

Kicked off by migraines! I didn't realize until recently that migraines can create a ME/CFS-like condition following the migraine in some people. Migraine type headaches appear to be VERY common in FM and ME/CFS - boy is that an interesting finding.

One study found cement-like legs may be a symptom of ME/CFS that differentiates it from other disorders.....And then there's muscle tension....I have cement feeling legs, muscle tension and head pains and IBS but not migraines...

 

[TigerLilea]

I'm too late for the survey as it is now closed. My CFS started three days into being on penicillin. I had had a cold for over six months that wouldn't go away. It turned out that I had two very badly infected teeth that I didn't know about and this was why I couldn't get rid of my cough and cold. My first symptom of CFS was very sudden exhaustion. One minute everything was going well, and then, BAM, I was suddenly hit with severe exhaustion and I've never recovered. The muscle pain started approximately a year later. I am now into year 25 of having CFS.

 

[Lissa]

OMG - they should study you.

I think you're a classic case - TWO cases of mono! (You're only supposed to get it once! ); recurrent tonsilitis as a child (unable to fight off infections easily), gut problems, traumatic injuries, tight muscles - I think you were a subset of ME/CFS waiting to happen.

Exactly!! I'd happily offer myself up for study. A while back I did fill out the related survey and volunteered, but I'm not sure it registered -- I got a message that the site had been updated overnight and I was using the expired form. (I had left it open to come back to in the morning and I didn't think to refresh the page before filling it in.) But it thanked me for playing so I was hoping the data went through. Let me know if there is anything else I can contribute...

I might also add that I'd had a round of Levoquin in 2004 that caused a serious crash that lasted a couple months... I've always suspected that it played a roll in my ultimate demise. Of course it was all brushed under the rug as a mystery -- doctors couldn't find any reason for my exhaustion, POTS, misc oddball symptoms. Luckily I was able to pull myself back to decent health that time - pretty much all on my own because they didn't have a clue.

And I have mentioned in other postings here - I officially had ME/CFS for 4 years and then got Lyme on top. Thankfully because it was acute, and I had a huge bullseye rash to prove it -- the doctors recognized it despite negative tests, and 4 weeks of antibiotics (plus a few months worth of herbal anti-cootie supplements) cleared it. So I have a bit of a unique perspective on the two diseases. I find it fascinating that some people are thinking that they are "the same". In my experience they are NOT. However, it would be interesting if they eventually discover that ME/CFS is initiated by some other tick or insect bourne cootie..... Once upon a time I spent a very significant amount of time outdoors and in the wild. Who knows?!

 

[Merida]

Lisa, very interesting comments. I had regular migraines on/ off from age 22 to about 38. Then, later had a few visual migraines - like you describe. No fatigue, no body pain except rt. hip. No sleep problems. Sometimes had trouble with heat - could get blotchy red face.

Fast forward to 1998 (age 49) - went to chiro for sore, popping right hip after yoga classes. No pain elsewhere. He twisted and pulled neck/pelvis. Then had many visual migraines, couldn't walk upright, only slept 1 -2 hour per nite for 4 months. Terrible pain all over. The whole syndrome full blown. Now mostly couch ridden, hard to shower or go to store. Did better for a while - Wellbutrin helped - after one year totally bed ridden.

Been trying to figure out what happened and why. Think I was born with a slightly tight spinal cord( confirmed by neurosurgeon in 2005 - expert in tethered cord syndrome. ) Also have mild scoliosis - which can put twist /torque in spine and neck. Also, scoliosis may have other associated boney amomalies - like small holes in sides of neck vertebrae. Important, as the vertebral arteries to the brain pass through these holes. So, twisting or misalignment of the neck vertebrae can also impinge blood flow. Called vertebral artery syndrome, and visual disturbances are classic. Please read.

I think scoliosis makes recovery from injuries great and small difficult. Plus, Chiari, tethered cord, syringomyelia can all be associated scoliosis . So there may be multiple 'glitches.' Tethered cord symptoms have been know to develop after seemingly benign events: cheerleading, high- kicks, a fall on tailbone, childbirth, hitting the car brakes, and even sitting in a poorly designed chair over a period of time. Very insidious.

 

[Merida]

Oops - sorry, Lissa!

 

[Lissa]

Lissa, very interesting comments. I had regular migraines on/ off from age 22 to about 38. Then, later had a few visual migraines - like you describe. No fatigue, no body pain except rt. hip. No sleep problems. Sometimes had trouble with heat - could get blotchy red face.

********** doh***** I screwed up the reply post somehow******** *********Lissa

WOW! Merida - that is all so fascinating! I can totally relate to the heat intolerance as well. Seems like my entire life heat & humidity would destroy me. Hot tubs, saunas, hot baths, tropical climates: within minutes I feel as if I am going to pass out, while everyone else is enjoying themselves immensely!

Blotchy red face - yep. It got especially bad in my late 30's and early 40's -- then got diagnosed with rosaecea. Since I've changed my diet over the years it seems to have gotten a lot better. But it still drives me nuts when people say -- oh you look great! You got some sun! Or they think I've been super active and got wind-burn skiing or something. But I've spent most of the past 5 years indoors and on a couch! Grrrrrr!!!!

I've been reading the various threads on all the spinal stuff and it really strikes a chord with me. I've had SO many injuries over the years. It wouldn't surprise me at ALL if it is related somehow. I get moderate relief from yoga body work -- which is basically passive manipulations done on a massage table. My yoga therapist also does energy work that is amazing.

I often walk out of there feeling human again! Too bad it never seems to stick, although I have made significant progress over a couple years. I keep hoping that I may be better enough to start doing mild yoga postures on my own again. I got ahead of myself and tried about a year ago --- the result was disheartening. I went backwards from just one small and extremely simple 5 minute session and was messed up for quite a while -- doh! Holy cow -- come to think of it --- it was a neck movement! Chin down, shoulder to shoulder, back and forth. Ah HAH!!!!! That would completely make sense with all you described!

Thanks so much for your input and for sharing your optical migraine story --- I just KNEW others here had probably experienced it too. I am very intrigued with the tethered cord diagnosis.... I have some studying to do!

 

[Merida]

Lissa, Also, forgot to mention : There are sympathetic nerves wrapped around the vertebral arteries in the neck. So, neck postions, stretching the neck ( oh oh ), jiggling the neck , etc. can disturb the autonomic nervous system.

I just got dx by (new) neurosurgeon with dysautonomia - that can be the reason for all these blotchy, heat, visual, dizzy, etc etc issues. However, the neurosurgeon sent me out the door with out even trying to understand where or why the dysautonomia. I know it is my neck/craniocervical junction. But, neurosurgeons are very reluctant to get involved with CFS/ME/FM patients.

There is a history to this - a particular neurosurgeon was banned from practice ( temporarily) for doing what the Medical Board claimed was unecessary decompression/neck surgeries on people dx with CFS/ME/FMS. This was about 15 years ago, but he still had some more recent issues.

Well, I flew across the country to see this person ( 2006) after hearing him speak at several conferences, and reading his work. He was wonderful. Spent 3 hours with me, detailed neuro exam. ( Last neurologist exam a month ago was 45 seconds !!!) Ordered very sophisticated urodynamics, and a CINE flow study - both very abnormal. He pieced together many of the missing pieces to this mess. Wonderful, kind, brilliant. I remembered that the brilliant scientist, Marconi, invented the radio, was promptly thrown in a mental institution by his friends !! when he told them he would send the human voice (with no wires) across distances. Copernicus was almost executed.

Wow. We need the neurosurgeons to help look at this mess.

 

[Lissa]

Merida, that's really interesting- I'll check that out too... None of my docs have even mentioned dysautonomia.

So I did some quick reading and my symptoms didn't seem to line up well enough with the tethered cord or the Chias/thingy.... Sorry typing on a cell phone and I don't have the brain cells right now to go back and look it up to get it right. My apologies- but you'll know what I was referring to.

I still think there is definitely some sort of link though regardless of what to label it. Some kind of dysfunction... Possibly anatomical in conjunction with an immune issue. (Causing immune issues? Or Chicken/egg? Then kablooey... It all goes south into CFS!)

Really it's like we all are throwing our puzzle pieces out on the table and finding that yes, they actually might fit somewhere at last!!! Unfortunately the sheer volume of possibilities is daunting.... There are just so many unknowns still! But I sure do think collectively we are on to something - even if we don't know what any of it means yet! Yay for this forum!!!

 

[Merida]

Merida, that's really interesting- I'll check that out too... None of my docs have even mentioned dysautonomia.

So I did some quick reading and my symptoms didn't seem to line up well enough with the tethered cord or the Chias/thingy.... Sorry typing on a cell phone and I don't have the brain cells right now to go back and look it up to get it right. My apologies- but you'll know what I was referring to.

I still think there is definitely some sort of link though regardless of what to label it. Some kind of dysfunction... Possibly anatomical in conjunction with an immune issue. (Causing immune issues? Or Chicken/egg? Then kablooey... It all goes south into CFS!)

Really it's like we all are throwing our puzzle pieces out on the table and finding that yes, they actually might fit somewhere at last!!! Unfortunately the sheer volume of possibilities is daunting.... There are just so many unknowns still! But I sure do think collectively we are on to something - even if we don't know what any of it means yet! Yay for this forum!!!

Lissa,
The links between CNS, gut, and immune function are not hard to make. Book ( a BIG one) : Spinal Cord Medicine: Principles and Practice , Vernon W. Lin, MD, PhD, editor in chief. There is a whole chapter : "The Immune System and Inflammatory Response in Persons with SCI." These are people with known serious spinal cord trauma. I am thinking we ( or a significant group of us) may have chronic, low grade trauma.

When we match the data and findings in SCI with known CFS/ME/FM findings it gets interesting.
From book : "Deficits in immune function and the presence of a chronic inflammatory state have been documented in the acute and chronic phases of spinal cord injury."

After known spinal cord injury these abnormalities have been noted ( page 218):
1. Elevated serum leptin
2. Impaired proliferation of progenitor cells ( like stem cells) Blast cells are one type, and they are involved in the generation of T and B lymphocytes.
3. Reduced natural killer cell counts ( !!!)
4. Elevation of various interleukins
5. Depressed T cell activation
6. Reduced helper to suppressor cell ratio
7. Depressed natural killer cell cytotoxicity and lymphocyte formation.
And More

For the gut structure and immune system, from : Fawcett WA et al. Immunodeficiency secondary to structural intestinal defects. Malrotation of the small bowel and cavernous hemangiomas of the jejunum. Archives of Pediatrics& Adolescent Medicine. Feb. 1986. 140(2):169 This is a case study of 2 children born with intestinal structural defects. Patient 1 had food allergy, chronic diarrhea, and significant defects in cellular and humoral immunity. Patient 2 had chronic anemia and similar immunological problems. They both had surgery to correct the bowel structural issues. Ten to eighteen months after surgery both children had normal immune function.
This is important stuff, and I know of no other research in this specific area of bowel structure and systemic/immunological effects.

I have struggled over 16 years to try to understand this - using the best science I know ( I am a biologist) : careful, objective observation and reading the research across many different fields. I am so tired.

 

[Lissa]

Lissa,
The links between CNS, gut, and immune function are not hard to make. Book ( a BIG one) : Spinal Cord Medicine: Principles and Practice , Vernon W. Lin, MD, PhD, editor in chief. There is a whole chapter : "The Immune System and Inflammatory Response in Persons with SCI." These are people with known serious spinal cord trauma. I am thinking we ( or a significant group of us) may have chronic, low grade trauma.

When we match the data and findings in SCI with known CFS/ME/FM findings it gets interesting.
From book : "Deficits in immune function and the presence of a chronic inflammatory state have been documented in the acute and chronic phases of spinal cord injury."

After known spinal cord injury these abnormalities have been noted ( page 218):
1. Elevated serum leptin
2. Impaired proliferation of progenitor cells ( like stem cells) Blast cells are one type, and they are involved in the generation of T and B lymphocytes.
3. Reduced natural killer cell counts ( !!!)
4. Elevation of various interleukins
5. Depressed T cell activation
6. Reduced helper to suppressor cell ratio
7. Depressed natural killer cell cytotoxicity and lymphocyte formation.
And More

For the gut structure and immune system, from : Fawcett WA et al. Immunodeficiency secondary to structural intestinal defects. Malrotation of the small bowel and cavernous hemangiomas of the jejunum. Archives of Pediatrics& Adolescent Medicine. Feb. 1986. 140(2):169 This is a case study of 2 children born with intestinal structural defects. Patient 1 had food allergy, chronic diarrhea, and significant defects in cellular and humoral immunity. Patient 2 had chronic anemia and similar immunological problems. They both had surgery to correct the bowel structural issues. Ten to eighteen months after surgery both children had normal immune function.
This is important stuff, and I know of no other research in this specific area of bowel structure and systemic/immunological effects.

I have struggled over 16 years to try to understand this - using the best science I know ( I am a biologist) : careful, objective observation and reading the research across many different fields. I am so tired.

Wow! I am floored by your dedication to digging deep into the research. And super glad that you have the background to look in the right places! The references you list sound great. Thanks so much for sharing them... I totally understand the toll it must have taken to post!

Right there with you on the SCI theory. It certainly seems to fit my history... However I'm curious --- how can MRI's, X-rays, doctors etc. not be able to see something? Too slight? Not looking in the right place? Discounting some anomaly as minor? Let me count the ways- ha ha! (Our world is still flat because it isn't understood yet!)

Also - I'd have to find the book you mentioned... But I am wondering about my low B cells, high T cells, and mostly standard NK counts. Not sure if I fit the profile with that from the list above. Although I certainly would like to read up on it! Thanks for recommending it.

As for gut issues... Ding ding ding of course! So here is a question: how many of us have had an appendectomy? Hysterectomy? Or other major abdominal surgery? What if that "useless" appendix being gone actually has grave effects for those of us with certain genetics or other factors?

So couple gut issues with some SCI/trauma, say bye bye to the immune system, et voila.... Eventually a viral illness knocks us down and the CNS never resets properly. And doctors are busy chasing the mystery virus... Sure makes a lot of sense to me!

Now how on earth to FIX IT ALL?! The bazillion dollar question!!!!!!!

(Rest Merida, rest! )

 

[Paw]

Interesting. For what it's worth, my very earliest possible symptom was chronic IBS, going back maybe 20 years -- and I did have an appendectomy (in 1980).

Also, a curiosity: for at least 20 years I've experienced a gravel-like resistance in my neck whenever I turn my head. I can hear the grinding in my ears no matter how smoothly I try to turn my head back and forth. It's like a ball-joint with sand in it. Saw a chiropractor about it once, thinking I'd damaged something with too much "neck cracking" in my early 20s, but he didn't have much to say about it.

 

[Merida]

Lissa,
You asked the trillion dollar question : How on Earth do we fix it all ?? Yes, searching the CNS for anomalies is expensive and exhausting. And how do we know what anomaly ( or any anomaly) is causing the problem. I just don't know.

Paw - any kind of abdominal surgery can cause scar tissue and abnormal twists/kinks in bowel.
Happened to a friend after hysterectomy. Neck cracking - oh yeah. Do you have mild scoliosis ?

 

[Lissa]

Interesting. For what it's worth, my very earliest possible symptom was chronic IBS, going back maybe 20 years -- and I did have an appendectomy (in 1980).

Also, a curiosity: for at least 20 years I've experienced a gravel-like resistance in my neck whenever I turn my head. I can hear the grinding in my ears no matter how smoothly I try to turn my head back and forth. It's like a ball-joint with sand in it. Saw a chiropractor about it once, thinking I'd damaged something with too much "neck cracking" in my early 20s, but he didn't have much to say about it.

Paw - I can relate to the cracking sounds. Mine doesn't make any noise during daily living, but when I go to lie down flat, my upper back/into my neck all cracks on its own -- and I get a sense of relief actually.

I do have a fairly prominent kyphosis in the thoracic spine which probably started in jr. high school. Plus - ever since multiple whiplash events over the years, I've felt like my neck isn't the right shape/curvature anymore. On a hard, flat, surface a majority of my back is suspended, and I have several inches of empty space in the lumbar curve as well as the cervical curve. It's like my body only hits the surface on the butt, a small part of my back below the shoulders, and the back of my head... and nothing in between. Not so fun!

Yoga had seemed to help somewhat over the years, before getting full blown ME/CFS. I did have a chiropractor once (long ago) who linked the thoracic injuries to gut problems.... subluxations in that region having a direct effect on nerves that go to the gut. ALL so fascinating!!!

 

[Merida]

Lissa,

Yes ! Is your pelvis tipped forward - like mine ? Good chiropractors really know a lot. Did I mention the web site : The Downside of Upright Posture by Michael Flanagan. DC - a neurological chiropractor with training in physical anthropology - especially interested in the skull and the skull base, blood/CSF flow and related.

 

[Merida]

More thoughts - these are a little wild, but . . .
Just had appt. with my chronic fatigue doc here in L.A. He is double board-certified in internal medicine and infectious disease, also a prof at a large University school of medicine. Wonderful doc !!! Several months ago I was watching History channel on Ancient Plagues ( why not ?), and my doctor was interviewed. Nearly fell off my couch.

He thinks that humans have been exposed to alien viruses, ie. from elsewhere, not from Earth.
So I got up the nerve to ask, "Well, do you think we have been exposed to these alien viruses on purpose, or by accident? He said very seriously, "I don't know. I don't know."

A good friend has been an aerospace engineer for many years. Worked on the Mars Rover - on magnetic flywheels. He is convinced that human people ( alone/with no help) could not have built the pyramids. I was in the great pyramid of Cheops in 1976. Walked up to the King's chamber. Saw the amazing engineering and perfectly aligned/fitted multi- ton blocks of stone. I think I have to agree with my friend.

Okay, meanwhile, back on Earth. . .

 

[Tammy7]

For me it all started with feeling dizzy and I was getting fatigued by 10:00 a.m.............gradually.......all hell broke loose......with a 101 bizarre symptoms. Looking back..............I had a number of BIG stressors several years leading up to CFS. Each time during these stressful times........I would feel fluey but my body would recover until March of 96 when it didn't.

 

[Merida]

For me it all started with feeling dizzy and I was getting fatigued by 10:00 a.m.............gradually.......all hell broke loose......with a 101 bizarre symptoms. Looking back..............I had a number of BIG stressors several years leading up to CFS. Each time during these stressful times........I would feel fluey but my body would recover until March of 96 when it didn't.

Tammy, I have heard this from others in support group as well, and have been intrigued by the possible relationships. I was good at handling stresses until my neck/pelvis injury. Now, just going to the store is extremely stressful. Others report that they could no longer deal well with stress after they had a viral infection. This happened to my son at age 5 after a documented EBV infection. He developed full blown CFS/FM symptoms. So, we both developed the same or similar disorder but by obviously different causes. Emotional Freedom Technique is interesting - on You Tube by Robert Smith.

 

[acouchy]

Fascinating stories of how this illness first appeared.

How it started for me...
In 1998 I started experiencing bad headaches every day at 1 pm. They were so consistent that I would take a Tylenol every morning to try to stop them before it started. Along with the headache I would experience extreme light sensitivity. I remember wanting to cry when the sun shone through the windows of my workplace and how painful it was to go from fluorescent lighting to natural light. I also noticed a huge change in my ability to perform my job. I even asked my co-workers if they noticed a change in me. I had become extremely slow at completing tasks due to cognitive issues and fatigue. I hurt all over and could not pinpoint where my pain was coming from. I felt like I was hit by a very big truck. All of this just happened one day... it was like someone flipped a switch.
Around the time my symptoms began I did have a very strange experience. I woke up one morning paralysed. I could not move my arms. My family downplayed it and told me I was overreacting and that I must have the flu. At some point during the day I recovered enough to go to the walk in clinic. I remember the doctor agreeing that I had the flu. I asked for a note to take the next 3 days off work. I also remember when I got up to leave the doctor asking me if anything else was wrong. I now wonder if he saw something was off. Anyways... The following day I woke up feeling fine. I was so confused because the flu usually does not last a day. So, I went to work. At the time I never thought of the two things (the start of my symptoms and this flu like illness) as being connected but now I wonder.