u/BinaThereDoneThat

I have a virus (suspected EBV). Fatigue and malaise shave stopped but I developed some vascular pain at some point and it has now moved throughout my body and is having a knock on effect on nerves. my blood vessels are very prominent and blue and painful. I'm told it isn't vasculitis. All my inflammatory markers are normal. I suspect neuroinflammation or endothelial inflammation.

Exertion flares it (it's much better with rest) and I am in agony. Nobody can figure out what to do with me.

Has anyone had a similar experience? what was it?

My fatigue, body aches, malaise, nausea have all lifted. Now just dealing with vascular pain in legs and arms and some associated neuropathy (which seems to be linked to overdoing it while having the vein pain).

Does this suggest it's been suppressed and these are mostly post viral in nature?

Seems this EBV may have kicked off some kind of immune overreaction (high ANA which apparently looks transient). Looks like it's causing some blood vessel inflammation. Doctors considering a course of steroids.

8 weeks in. Generally feeling a lot better except for lingering joint and muscle pain (particularly in the morning), exercise intolerance (tried walking 1km a few days ago and still tired/sore, have had a few boom and bust episodes like this), and fatigue (linked to exertion but is generally much better than it was 4-6 weeks ago). Also developed very annoying eye twitches and histamine intolerance/MCAS. My ANA also skyrocketed which rheumatology thinks was transient.

My question: what do I do now to help my recovery? Supplements, physio, diet, things not to do. Things seem to be trending up but so so slowly. Incredibly frustrating.

About two months ago I fell ill. Possibly reactivated EBV, possibly let-down affect following a period of very high stress. Anyway there was some kind of major immune event. Since then I have been waking up achy and sore every morning. It now seems to be settling into my joints - ankles, knees, wrists are all sore, especially in the morning and this seems to be getting worse. Also feel fatigued when pain is there. An autoimmune panel found that my ANA was 1:1280 (nucleolar) - last auto-immune test I did was two years ago and it was much lower but still positive. Rheumatology said not autoimmune as all the sub tests (ENA and DS DNA and RF) all came back negative.

Potentially related - anti histamines before bed seem to help slightly. I know I have histamine issues.

Can anyone offer some insight - does this sound like it could be reactive arthritis? If so, is it likely to go away? What should I do next?

At my wits end.

Symptoms - skin hot to the touch, was previously reacting to trigger foods and now it's lingering all the time (bucket full?), heart palpitations, fatigue, aches.

I'm planning to focus next few days on eating low histamine and low FODMAP. And really easy to digest foods. Also using marshmallow root tea to line the tummy. Using H1 & H2 antihistamines twice a day. Lots of water.

Then hopefully once things calm a little, I can begin introducing some targeted probiotics (things flared after several courses of antibiotics over a 3 month period).

Read that Zoloft can be risky. Any others that will reduce histamine load/alleviate MCAS symptoms?

Need advice. I developed muscle pain and a burning sensation while taking a course of antibiotics. 3 days later and things flared. I am now 3 weeks since finishing the course and it doesn't feel like things are getting that much better. Good days and bad days - aggravated by any kind of physical activity. Pain in wrists, ankles, burning sensation throughout body - especially back and arms. Thigh muscles very sore. It only improves if I rest aggressively.

What should I do to treat this?

Female, 42 years, 60 kg.

From about 10 days after starting levothyroxine, I started feeling unwell. Body aches, flushing, feeling very inflamed, tired. Also started having histamine reactions to foods. I'm on oral solution so minimal excipients (just glycerin and preservative). I'm starting to wonder if it's the synthetic levothyroxine. Or could it be the other excipients. Joint aches are actually becoming painful now. All my thyroid levels are in the normal range.

I'm considering just stopping it and seeing what happens but don't want to end up hypothyroid either. Wondering if anyone on this sub has done that and after how many days did you see a change?

For anyone this happened to, what helped? Gel Caps? Dessicated thyroid? Adding T3?

Getting desperate :(

TSH is 1.6, T4 is 14.4 and T3 is 3.8 in latest blood draw 6 weeks after starting levothyroxine. But I feel achy and fatigued and not good, particularly in the last 4-5 weeks. My vitamins are all in normal range except zinc. Not sure where to go from here. Taking liquid levothyroxine so little or no fillers.

Was not having nerve pain before this medicine. Started getting neuropathic pain while taking Doxycycline. Also had intense Myalgia in my quads which was 100 per cent caused by the medicine. SFN has been coming and going since stopping medication. Definitely worsened after a back massage while still feeling inflamed. It's been two weeks since stopping the medication. It's not constant. But seems to worsen with activity.

Also had suspected EBV/Mono around this time.

Really getting me down now.

In the run up to getting properly sick, had sore jaw/neck for weeks. Was very stressed so didn't let myself get ill until I went on vacation and then boom - fatigue, malaise, heart palpitations, spleen pain, body aches, some nausea. It's been going on for 5 weeks and gradually gradually feeling better, but it's slow. Only had a few days of feeling really rough, but the rest of the time it's been mainly very fatigued and body aches.

Did a blood test and it showed positive for past infection (vca and capsid IgG were positive) and vca IgM was indeterminate. Test was done at 4 weeks post symptom onset

Had issues with HI in the past. Got pregnant and they disappeared. 6 months later and I think my HI is back. I had one meal which by all accounts was high histamine and bang! Crazy flushing, heart pains, fluttering heart, malaise, pressure behind eyes. And now it feels like I can't eat anything. I literally feel normal only when not eating.

Is this possible? For it to come on so quickly?

Multitude of symptoms and not sure what is what. Definitely having reactions to high histamine foods and certain medications. Otherwise dealing with fatigue, intermittent body aches, flushing and burning/prickly heat sensation on skin, slight nasal and chest irritation, drops in blood pressure and intermittent heart pains/fluttering/palpitations when things get bad.

In a full blown flare at the moment that was either caused by a bug/stress/sudden exposure to extreme cold/drinking alcohol (all happened around the same time).

I have SIBO.

6 month pp. Three children. Had PND/PPA with my others but was mild and managed it without medication. Was diagnosed with cancer when my youngest was 8 weeks old. I Have been stressed out of my mind amid surgeries and kids. A few weeks ago I got really sick and haven't recovered. I'm exhausted and in pain and i don't know what is wrong (it isn't cancer related) - potentially an autoimmune flare from all the stress.

I feel like I'm in hell and don't know where to turn. Family support is very limited. I am no longer coping.

Currently in the midst of a very strange immune flare. Came out of nowhere. A period of high stress came to an end. Relaxed and boom - sudden hot flushes (face turned pink), felt very unwell, sudden heart palpitations and pains, aches and pains, fatigue. Like I suddenly became very inflamed. No fever or other obvious viral symptoms, antibiotics haven't worked and CRP was normal. Hasn't stopped for weeks. I know I have a few biomarkers of autoimmunity and have suspected MCAS in the past after first time having COVID. Does this sound like MCAS? How to figure out if that's it?

After a partial Thyroidectomy my thyroxine levels plummeted and while getting my meds sorted I ended up in a strange place where it felt like I was running on adrenaline to make up for the lack of actual energy. This went on for several weeks. Felt like I could not down regulate. This was all during a period of extreme stress (thyroid cancer and new baby). Then one day I crashed. Since then have been exhausted (barely any energy, foggy, have aches and pains, nausea, generally feeling unwell, intermittent pain where I think adrenals are).

Thyroid levels are fine now. But something is wrong and I don't know what.

I do not know how to think about this stage. I have had lobectomy and neck dissection for PTC. The nodule was fully removed with clean margins. Some lymph node involvement but small nodal burden, no ENE and deposits were not micro but small. My medical team think that any farther spread if it exists is likey minimal but cannot say for sure.

Now must determine what to do next. Conservative management or completion are the options. How to think about this stage or cancer status if conservative management is path I choose? I do not think I can be considered cancer free either without Thyroglobulin testing or RAI body scan?

PTC Classic variant. 30 percent of nodes sampled came back positive, including one lateral node. How bad is this? How likely that I have distant metastasis? Having one of those days where I am worrying so much.

I am debating whether to go through with completion. My major fear is how I am likely to feel on meds and this is factoring into decision about whether to do completion. I am likely going to need levothyroxine now (3 weeks after a partial and having hypo symptoms) and wondering whether how I feel on those will give me an idea of how I will feel when fully on meds post completion.

I don't believe I have conversion issues (after looking at multiple T3/T4 blood draws). I do have absorption/gut issues.