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Chronic Fatigue Syndrome Community
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Avatar universal

Constant Fatigue, Pain, IBS, Headaches, More, with Little Help from my Physician

Hello, I am really hoping someone can point me in the right direction with this.

4 months ago I woke up with severe lower back pain. I have been to my gp several times over the past few months. They maintain it is muscular and will go away on it's own.

This back problem has really compounded my fatigue issues which I have had for as long as I can remember. I used to have to nap when I got home from school as a child. Since I have been off work with my back problem, I am suffering very badly with fatigue. I am sleeping most of the day and night only waking up for meals.

I have mentioned this several times to drs over my life and it is always put down to depression which i do have but manage symptoms with anti depressants.

My last gp wanted me to get blood tests which have come back normal but with low folate levels. B12 was apparently normal even though pernicious anemia would seem to fit my symptoms. I have been given b6 supplements to address the folate issue.

My question I suppose is could I have cfs? I would also mention I have terrible IBS, headaches, inability to concentrate, difficulty focusing my eyes, sweating, breathlessness from mild activity, irritability,  dry skin and psoriasis and terrible heartburn after every meal (most days with reflux as well)

Does anyone have any suggestion to help because my drs are completely dismissive and I'm at my wits end. I feel like they don't believe me.
4 Responses
1081992 tn?1389903637
Hi, a short answer:
It might be Mast Cell Activation Syndrome (MCAS) or else mastocystosis, especially because of "terrible IBS, sweating, breathlessness from mild activity... terrible heartburn after every meal (most days with reflux as well)".
The digestive tract, skin, and lungs are lined with immune cells called mast cells. Mast cells secrete over 200 biochemicals that control other cells. It's very complicated and not easy to diagnose. Many sufferers see several docs over several years in frustration.

"headaches, inability to concentrate, difficulty focusing my eyes"
Those as well as the fatigue, can be downstream effects of immune chemicals such as histamine and prostaglandins. The "inability to concentrate" is commonly referred to as "brain fog".

One note on "terrible heartburn": the common antacids such as Pepcid are really histamine blockers.


Intertwined with all of this might be exposure to molds or other toxins which trigger the mast cells. Do you live where there is mold?

"depression"
Who wouldn't be depressed after suffering all that you have for years, right?
1 Comments
Hmm. This is interesting. Thanks for the information. I don't have a mould issue where I live. I live in a reasonably rural area though.

I have a dr appointment tomorrow. I am going to write down all my symptoms and take my husband with me so hopefully they will take me more seriously. I woke up this morning at 8 am and was back in bed by 10 am. I slept until 5 PM and I am still tired and will probably go to bed at about 11 PM. It's very frustrating because I feel like I'm missing life.
1081992 tn?1389903637
A doc who is unacquainted with this might scoff, so then you can show this article on the topic in the ultra prestigious New England Journal of Medicine. It's for-pay but every doc would likely have a subscription.
https://www.nejm.org/doi/full/10.1056/NEJMra1409760
"Mast Cells, Mastocytosis, and Related Disorders"

Being published in there shows it's not just some flaky thing. Let me know what the doc says. Make sure your husband takes a pad & pen to write notes. Good luck.


"I live in a reasonably rural area though."
Sensitivity to pollen or whatever could explain your childhood symptoms, then eventually things got much worse for you.



Avatar universal
Have you tried and antidepressant or an anti-anxiety medication? From your symptoms listed I would guess anxiety and depression are involved with all of this pretty significantly
1 Comments
Yes I a currently taking sertraline. I've been on medication for depression on and off for the past 15 years.

I finally got my gp to send me for an xray on my back so hopefully that will get to the bottom of my back issues.

The gp said I would have to make another appointment to discuss everything else because of time pressure.
973741 tn?1342342773
Okay, sorry if you say and I miss it.  Are you female?
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