For those with CCI can you describe disease state/symptoms/progression?

Swim15

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I’m thinking I’ll need to rule out CCI at some point but, for those who have experienced it, did any of you guys have periods of remission or was the disease state constant?

I’ve had brief periods of remission and not sure if that’s something you would see with CCI. Apart from headaches/tension at the base of my head occasionally and sore/tight neck/traps, I’m not sure if I have any other symptoms that fit much besides temperature intolerance.
 

bensmith

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Ih aven't looked tino it very much but i have similar to wht you desrcibe, also that is how my cfs started i think. ate some heavy histamine food(HI) then got what you describe real bad, went away when bed bound nw coming back after moer histamine raciton i think. intersted in this thread. i have temp issues too but before so.
 

valentinelynx

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Quick summary of my illness:

Sudden onset (like a switch) in the spring of 1993. After about a year and a half of denial, diagnosed myself with CFS. By this time I was a first year medical student. Dr Jay Goldstein helped me to function as best a possible. I even had 1 week without symptoms after he gave me a ketamine infusion, but after a week the symptoms returned and I couldn't repeat the experience. I managed med school in pre-clinical years but when I hit the hospital rotations had to take time off between rotations.

In 1997, I had a remission of about 80% that allowed me to finish my medical training without any more breaks. I wasn't able to do anything else: after work I was in bed until next shift. The remission lasted until 2009, when I had to drop a new full time job after the first day.

I tried treatment for Lyme disease and Bartonella in 2011-2017 with some mild success (decreased hand joint pain and stiffness, for example). Have been seeing Dr. Kaufman since 2015 with only mild benefit.

Diagnosed with CCI in 2020 by Dr. Bolognese, after Dr. Kaufman sent my cervical MRI (done for C6 radiculopathy in 2016) to Dr. Bolognese and he read it as potentially positive.

So, the answer is yes, it's possible to have significant remissions with CCI. No, I can't explain how that works...;)
 
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Quick summary of my illness:

Sudden onset (like a switch) in the spring of 1993. After about a year and a half of denial, diagnosed myself with CFS. By this time I was a first year medical student. Dr Jay Goldstein helped me to function as best a possible. I even had 1 week without symptoms after he gave me a ketamine infusion, but after a week the symptoms returned and I couldn't repeat the experience. I managed med school in pre-clinical years but when I hit the hospital rotations had to take time off between rotations.

In 1997, I had a remission of about 80% that allowed me to finish my medical training without any more breaks. I wasn't able to do anything else: after work I was in bed until next shift. The remission lasted until 2009, when I had to drop a new full time job after the first day.

I tried treatment for Lyme disease and Bartonella in 2011-2017 with some mild success (decreased hand joint pain and stiffness, for example). Have been seeing Dr. Kaufman since 2015 with only mild benefit.

Diagnosed with CCI in 2020 by Dr. Bolognese, after Dr. Kaufman sent my cervical MRI (done for C6 radiculopathy in 2016) to Dr. Bolognese and he read it as potentially positive.

So, the answer is yes, it's possible to have significant remissions with CCI. No, I can't explain how that works...;)
Thanks for sharing your story! Can you describe what are your main symptoms? I have been diagnosed with both CFS and EDS Hypermobility Type and am also wondering whether I should rule out CCI. My doctor and PT didn't think it was necessary to rule it out because while my neck feels rigid, I don't have headaches or feel dizzy. My main symptoms are fatigue, PEM, brain fog, cognitive challenges and digestive problems. I also might have dysautonomia/POTS (the tilt table test was negative, but my HR does go up by more than 30 several days from siting to standing when measuring it at home and I am currently taking medication).
 

valentinelynx

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Your symptoms sounds similar to mine. Mine have changed over the 28 years I've been ill. For example, in the early years I had frequent sore throats and swollen glands, but nothing like that in the past 20 years. I used to have migraines, but rarely since menopause, and pressure type headaches with pain behind my eyes. I used to have frequent severe neck pain, but that is now uncommon (really only happens when I use the laptop too long).

Now I have:

  • Constant fatigue, worsened by activity (PEM)
  • Constant pain, all over my body of various types: joint pain, muscle pain, burning pain, allodynia (hurts to touch my skin), occasional headaches, occasional neck pain.
  • Limb weakness (I didn't realize this was an issue for me until I felt the notable increase in strength in my arms and legs under traction!)
  • Disrupted circadian rhythm (full reversal of sleep cycle: awake at night, sleep in the day)
  • GI issues: alternating constipation & diarrhea. I also have NSAID enteropathy, with severe scarring and ulcers in my small intestine, and have to be very careful about my diet to avoid partial small bowel obstruction. In the early years of my illness I suddenly became lactose intolerant. This resolved with time.
  • Vision problems: double vision (I've always had some issues, being born cross-eyed & having corrective surgery at age 2, but these days, the columns of a newspaper all mix-up together. My visual acuity also shifts frequently and I have terrible floaters. Also I have severe dry eye and eye pain.
  • Constant tinnitus
  • Brain fog: for me this is primarily loss of ability to multitask and to sequence things easily as well as terrible memory.
  • I don't know if I have POTS. Like you I had a negative TTT (it wasn't done very well), and I have distinct jumps in HR on rising, but not usually 30 bpm. However, I take medication that limits my heart rate. I do have orthostatic intolerance, because these days I feel pretty OK when lying down (pain is still there, but better), but awful when I stand up. I gave up showers years ago, because they wipe me out.
  • Stiffness and pain in hands, pain in feet (this used to be much worse, don't know why it got better).
  • Allergies to many, many things: fragrances, formaldehyde, smoke, volatile organic compounds, outdoor and indoor things—this is probably simply a manifestation of MCAS. It started suddenly when I fell ill; never had any allergies before then.
  • Bladder issues: burning on urination with infection, frequent urination, small bladder capacity, sometime difficulty urinating.
Past symptoms not currently present:
  • I already mentioned frequent migraines, "pressure" headaches & frequent severe pain in the back of my neck
  • Also already mentioned: sore throats & tender lymph nodes & lactose intolerance
  • I used to have severe myofascial pain syndrome (tight bands and trigger points in muscle). I've been receiving Thai massage every two weeks for over 20 years and this helps tremendously to keep this under control. In the early years of my illness my legs were so tight and painful that in order to sit I had to essentially drop from standing to sitting.

In addition to a diagnosis of ME/CFS, I also have hEDS. I'm sure I've forgotten some things!
Hope this is helpful.