Chronic Fatigue Syndrome Support Group

I was just wondering about the onset for everyone? I got really sick in July 2003, was bedridden for a month with severe vertigo and what the doctors labeled a virus, where my body felt like there was electricity going through my veins. The most horrible thing at the time.

Since then, I had made an almost complete recovery except some off-balance issues, sometimes dizzy, but overall not too bothersome. Then I had my first daughter 3 years ago via c-section and then my problems began. It started with heart palpitations and severe fatigue. I have a phobia about my heart so I've had an echo, holter monitor, and stress test where everything came back normal. I went to numerous doctors to no avail, all labeling me as depressed.

Eventually, with diet and time I started to feel somewhat more energized. Then I got pregnant again and just had a baby 5 months ago. This time, the symptoms are back even worse. I have such impaired thinking, like I'm actually not thinking at all. I feel like I just stare vacantly off into the distance. I sleep for 8 hours waking up feeling like I haven't slept at all. I have chest pain, dizziness, panic attacks, shortness of breath, my legs feel like I'm trying to walk through water they're so heavy and aches and pains throughout my body, lower back, shoulders, and feet/ankles especially.

I guess my question is if it's possible that c-sections could have brought about something like CFS or Fibro?

Thanks all, this seems like a great place....

I have not been diagnosed yet, but as I rule out one thing after another, I start thinking I may have CFS (which scares the heck out of me cause I don't want it!).

I'm not sure about C-sections, but I wonder if difficult pregnancies or deliveries in general could have something to do with it.

I had a difficult pregnancy two years ago with pre-eclampsia and dysfunctional placenta, and from the very beginning of that pregnancy, I was sick, and have had numerous, vague symptoms ever since.

Hate to hijack a question, but could folks add in how they were diagnosed with CFS?

Thanks,

Anna

Looks like we're on our own here! How are you feeling? I've just started taking an anti-depressant again because everyone says it's just post-partum depression. Can I ask what your symptoms are?

Hope you're well,

A

I'm coping as best I can. I'm trying to find a good rheumatolgist or internist to get tests done and other illnesses ruled out, and I'm amazed how difficult this is in the large city that I live in. Many won't even make an appointment with you if you say you might have chronic fatigue! And then the drs who specialize in treating CFS (in my area at least) don't take insurance. And I'm trying to stay away from the ones who sell you all kinds of supplements and send you for acupuncture. That's just not going to fly with me.

My symptoms - increasing over the past 2 years:

- Extreme fatigue (always tired since 2/08, but became debilitating since 8/10).

- Headaches daily and constantly

- Achy hands and achy joints since 8/10

- Brain fog, difficulty concentrating, short-term memory lapses since 8/10

- Orthostatic hypotension (low blood pressure upon standing causing lightheadedness/dizziness)

- Inability to lose weight with diet/exercise and gain weight VERY easily

- Re-occurring rash on neck/throat/chest/ears

- Muscle weakness

- Increased anxiety

- never feeling rested or energetic no matter how much sleep I get

- No sex drive

- Hands ocassionally turn blue, but a dr. ruled out reynaud's phenomenon

- decreased immune function - repeated colds and sinus/ear infections

- low ACTH, morning corisol, and thyroid FT4, but not low enough for an endocrinologist (so far) to treat me

I'm really tired today because the weekend wore me out. My kids are ages 3.5 and 2 years old, and by the end of the weekend, I'm just ready to crash. Thankfully it is quiet at work today.

How are you? I had pretty significant post-partum anxiety, so I can relate. Have you been diagnosed with CFS or Fibro? To me, the anxiety or depression is a symptom and not the whole diagnosis. Sorry - but anxiety does not cause low blood pressure or low corisol levels - that just doesn't add up in my case.

Anxiety and depression have both been linked to CFS as has low cortisol and low thyroid (both of which I have). I actually think it is the low functioning of these endocrine organs causing many of the symptoms, but so far haven't found an endocrinologist who is open to talking about it. So at this point, I thought I would try to find an open-minded rheumatologist rather than an open-minded endocrinologist

Best wishes,

Anna

Sorry for the delay, I was on vacation without a computer. I have pretty much all the symptoms you have, along with some visual disturbances, like dizziness and feeling off balance. I think I have an inner-ear problem though, from many years ago so that might be the reason for that. The hardest part is the anxiety and constant exhaustion, like I can barely keep my eyes open, and you know how hard that is with children! I just want to be the mom I always thought I would be, outgoing, fun and energetic. I'm practically a shell of a person at the present, wanting to lay down all the time (I don't always feel the need to actually sleep, but the need to lay down is overwhelming).

I'm due to get my adrenals checked as well as hormones. I did look at the symptoms for hormone imbalance and what you've said sounds like it so maybe look into that? I'd love to stay in touch, just to talk to someone who understands how horrible this feels.

Hope you're well...

I think you both may need to see a neurologist. I think it's possible you both have FMS (Fibromyalgia) rather than CFS. There are some important differences, but I think that it's more likely you both have FMS. The big thing with FMS is that it can be triggered by trauma. The one thing you don't mention is pain, which is usually very common in FMS, and not in CFS, but CFS rarely comes following trauma and mysteriously clears up. Now, it CAN, not saying it can't, but it's unusual.

I had horrible luck with a rheumatologist--really didn't care for the doctor at all, and am sooooo happy now seeing a neurologist that I can't tell you how much I recommend to do that. My neurologist is a pain medicine specialist as well, so that helps. All in one place, ya know?

It's possible that you also have both FMS and CFS, something else to consider.

Hope that helps a bit.

Hugs,

jen

Jen - I also considered that I may have FMS or a combination of CFS and FMS. I'm not exactly sure. The only pain I have (so far) is in my hands and wrists, and knees (only upon kneeling). The achiness in my hands is the strangest. Kind of a tingling, pin prick sensation coming from the inside out. It can happen anytime when I am just walking along, but happens primarily at night when lying down to go to sleep. I have a pretty high pain tolerance (as I discovered during childbirths), so the pain/achiness is more annoying than actually painful, but after a while it's just one more thing and does irritate me and add to my grumpiness.

I did see a rheumotologist about 2 years ago to investigate possible Lupus, and he ruled it out. I'm not 100% certain he did all the needed tests though (ANA antibodies), so I will also discuss autoimmune disease possibility with my next doc (rheumatoid arthritis is another possibility, but I'm not sure that fits all my symptoms).

I found an MD locally who seems open minded who exclusively treats patients with CFS, fibro, hormone imbalances and chronic pain. She is not associated with a specialty, so I will have to see if she will be able to meet my needs. She gets good recommendations for being thorough in testing and for working with patients on treatment plans that they are comfortable with. My appointment is tomorrow, so I will report results afterward. I already have my hopes up - just hoping that she can help me.

Pokiok - have you had a brain MRI for possible pituitary issues yet? I ask because of your visual disturbances. That can sometimes be associated with benign pituitary tumors or cysts which would then lead to adrenal and other hormone imbalances.

I know exactly what you mean about trying to be the mom that you envisioned. I never envisioned that I would be laying on the couch asking my sons to play on their own for a while because I had to rest. I also want to lay down all the time. I typically have to leave my office early to find an isolated couch just so I can lay down while I wait for my husband to finish his work because I can't make it through a full day.

Hope you all have a good day (the best we each can right now).

Best wishes,

Anna

This doc sounds like she could definitely be the one for you. Please let us know how the appointment goes! I'm really interested to hear the results. The hand tingling and pain is pretty common with FMS, cuz FMS affects the nerves, so I wouldn't be surprised to hear that. But it could also just be a pinched nerve, so who knows? It's so hard to tell with many of these syndromes. Just keep us updated, cuz any info you have would be helpful to all of us!

Hugs,

jen