No diagnosis yet...seems to line up with CFS. What do you think?

Brain and nerves
1

Some background: 43 y/o female- Have HSV2, HPV, and IBS.

This whole deal for me started about 8 months ago. I came down with what felt like a weird flu-like malaise for several weeks which started with light headed/dizzy spells, blurred vision, headaches and episodes of tunnel vision that made me feel like I wanted to pass out whenever I exerted myself. It went from that to episodes of tachycardia when I drank caffeine (which I did daily up until then) which amplified the feeling of near fainting and good ol' IBS flare up. These episodes would usually happen at work, and I thought I was dying. I was tired constantly. Made excuses and blamed on lack of sleep. Went to my doctor. They ran tons of tests: Thyroid Panel, Brain MRI, Chem Panel, CBC, Vit D, Abdominal CT,  Stress Test, Urinalysis, Thyroid US, Endoscopy, Colonoscopy, Opthamologist...I'm sure I'm forgetting something. They came up with nothing significant. A few minor findings:

Abdominal CT- slight inflammation in R intestine and a cyst on my kidney (sent for colonoscopy)

Thyroid US- 2 small nodules (just monitor)

TSH- 4.57 (placed on Levothyrovine 50mcg daily)

Colonoscopy (polyp removed- no other issues)

Opthamologist (two small cataracts bilaterally)

Brain MRI- slight fluid in the orbital area (neurologist said not significant)

Fast forward three months. Felt good again, regained my energy. Light headed/dizzy spells and blurred vision subsided. I could even reintroduce a caffeinated beverage without issue. At the time, I thought it was just because my thyroid levels were regulated and that must have been the issue all along. I did notice a big increase in hair loss during this time, but again...I felt so good during that time I ignored it for the most part.

Then came June of this year. I remember the heat wave came in and my energy felt zapped. I blamed how I felt on the weather and just thought it was a combination of not sleeping well and hot weather. I just wanted to go to bed and couldn't wait to get home all day and my muscles felt tired. They felt like they were being worked out with even small movements (like a lactic acid burn). It felt like my legs were made of lead and walking up even a small incline felt like drudgery. Again, made excuses for myself.

In July, my family was leaving for a camping trip and we were getting everything prepped and ready. I noticed that week I started to feel strange. I woke up feeling shakey in my legs. They weren't physically shaking to where someone could feel it if they put their hand there, but they felt weak and unstable to me. At first, I brushed it off as me missing my multivitamins or something. This went on for a couple weeks... and then returned the constant tiredness, light headed/dizzy spells with headache clusters (that would last all day) and the occasional fainty tunnel vision feeling. I felt out of sorts, and just not myself. Feeling these symptoms all day accompanied with being tired made me want to crawl out of my own skin. I would drag myself home from work and not have the energy to do anything...not even go to town and get groceries. My kids getting me out of the house was like pulling teeth because I knew if I went I'd be twice as exhausted when I got back. I didn't even want to make dinner. Fast food was (is) my evil friend. Oddly enough, come 7pm, I'd get an increase in energy and start feeling better with all my symptoms. There was one night after 7pm when I got some energy, I decided to go for a 30 min walk around my neighborhood. I paid for that the next day. I was so wiped out. As of late, the latest symptoms (in addition to the above) have been unprovoked waves of anxiety that hit me fast and hard and numbness and tingling in random extremities. Last week, a muscle from my L buttock to my L leg started feeling tight and having numbness and tingling (or that fall asleep feeling). The pins and needles feeling subsided over a period of hours, but the weird numb, tight feeling (like right after your foot or hand falls asleep and starts to resume feeling) lasted about 36 hours. The same thing happened in my R forearm and hand two days ago. I still have use of my extremities when this happens, it just creates an odd, "rubbery" overworked muscle feeling. I get intermittent aches in random muscles that last for literally seconds. My symptoms seem to get worse in the heat and better in the cold. My digestion slows way down, so I get indigestion and lose my appetite easily. This is the weirdest thing I have ever experienced. I have an appt with a Functional Medicine/Internal Medicine doc next Friday to hopefully get some answers. I was looking up the tender points for CFS and I definitely have those. I was grateful to find this group because, thanks to Google and my nerves, before this forum I had myself convinced I was dying from a terrible, rare neuromuscular disease.  

So, currently, I am exhausted. Woke up this morning at 9 feeling ehhh, but was wiped out by noon. My daughter's 18th birthday is tomorrow so my mom came up to go to lunch. I went with them and just wanted to come back home. They all wanted to do something else, so I just went along and didn't say anything. I did however, pick indoor miniature golf so I could control the temperature of where we were. I haven't really talked to my family about how I feel...mainly because I have always been complaining about my health for something or other (women's issues, thyroid, not feeling quite right, etc) and I didn't want to be "that person" who held them all back from doing something fun. Not to mention, I completely understand that feeling I have heard people mention here where you feel like no one believes how you feel because you look normal on the outside and they've seen you do things during your well times. In hind site, I probably should have said something. I know I need to speak up to take better care of myself. Currently, I still get by at work, I'm not in intense pain all the time, but I know it can get much worse. My body was screaming to come home. It was all I could do to drag myself back. So, here I am. Occasionally, I will have a good day sprinkled in with my bad days, but mostly they are just ehh. I feel like I have lost my zest or passion for life and I really don't enjoy much of anything anymore. Anyone relate to my story? This all feels very new and I'm hoping the Functional Medicine/Internal Med doc who specializes in Chronic Illnesses/CFS/FM can get me a diagnosis and help get me back on a road to recovery.

2

Hi, I can relate to a whole lot of what you're sharing. I was where you are. I was too afraid to tell the truth about how I was feeling. I didn't want to sound like I was complaining. I didn't want to lose my job. I didn't want people to think I was lazy. I'm single and had been independent for a long time and just thought I had to do what I had to do. One thing led to another until it all got much worse and my only choice was to speak up. But no longer see that as a bad thing. Actually it's a blessing. I see it as learning how to stop an old pattern and communicate to the best of my ability. It takes being vulnerable but it is very freeing and also healing to be able to talk about what's happening in a way that doesn't sound like I'm dumping on people. I try not to sound like a victim but I do need to make boundaries and that can be difficult  because I am typically the caretaker. But, I learned that my health has to be my priority. Meditation has been crucial for me. I keep it up everyday no matter what. My recovery (I avoid saying "my illness" or "my disease&quot has been a full time job for the last 3-1/2 years and I'm currently 61. I am a voracious reader and I'm always doing research. A functional doctor is likely to be much more helpful than a regular MD. At least that is what I've discovered. I don't have the ability to tolerate any meds. Not even some natural things. SO, bottom line.... listen to your body. Whatever methods you try, start slow. It's a learning process. Joy and passion took a while to return to me. I bought a ukelele and taught myself (with youtube help) how to play and sing. I also kept a journal of things that made me feel joy. I also started doing mirror work from a technique called "mental therapeutics" which has been very powerful for me and I HIGHLY recommend it. Actually I have a huge arsenal of helpful tools I've gathered along the way. Whatever helps, even if it's just a bit, consider it worth continuing. Be honest with yourself. But also remember that your body is very intelligent and this is a physical, emotional, mental and spiritual journey. 

3

ditto here too.....I wish SOMEONE had some idea what in the world is going on with all of us!!!!! maybe it truly is our brain (neurotransmitters) stuck in a rut and we need to work on building new ones.....i don't know....i've tried everything else.

 

4

Thank you for responding ladies! It’s good to know I’m not alone.

I have a few theories right now about my issues and CFS...one of them is my thyroid issue. I’m going to follow up on that, as well. 

5

Hi Charcey, I'm sorry to hear what a rotten time you're having. I recognise exactly what you're going through, your symptoms sound very similar to mine of the last few years. Unfortunately I don't have any time at the mo to go over my full, and tedious probably!, background but I will message later if you like to discuss more. Cut a long story short, after literally hundreds of doctors and hospital visits, misdiagnosis and research, I have Reactive Hypoglycemia complicated by severe Adrenal Exhaustion and thyroid trouble. Mostly from a parasite I caught about 12 years ago, then made worse by stress. Anyway, don't know if these will ring any bells with you, if not I will shut up and wish you luck in recovering from your illness. Got to go, but sorry if I've butted in on anyone else's replies, I've not had chance to read them. Best of luck, take care.

6

This sounds SO much like my experience. I get almost all the symptoms you mention. Especially the digestion slowdown - I get gastroparesis (slow digestion in the stomach) but also diarrhea, so my whole digestive system is out of whack. My doctor just calls it "motility disorders" because that's what it is; I have too much motility in one half and not enough in the other!

I also feel like passing out and have trouble with temperature regulation. I've even had the weird thing where I suddenly feel energetic at night - I've actually been lucky enough to change my work schedule to be later in the day and I feel much better! (Because of early meetings yesterday and today I had to go in to work at 9am today instead of my usually 10:30 or so, and I had to come home at lunch time because I felt so unwell).

"no one believes how you feel because you look normal on the outside and they've seen you do things during your well times" - I can relate to this so, so much it's horrible. I always feel like I have to justify myself and worry that I'm exaggerating my illness or something, just because people can't perceive how sick I am and I feel ok sometimes!

 

7

Thank you, grailmoth. You have no idea how comforting it is to hear from someone else who understands and had the same symptoms. The last 8 months has been a scary, trying time with my health. Thank you for normalizing that for me. 🙏🏻

8

Has anyone here tried DNRS? I just heard about it, but I don’t want to be gullible and fall for some kind of scam. Even so, I know you can all relate to the desperation of wanting to find help.