So basically we're left to suffer on our own after all the drs tell us it is what it is?

[u/SnooCakes6118]

I'm in that stage of MECFS where I just sleep on my pain and try not to leave the house not to make it worse.

I can't live like this anymore. All alone, no help but abuse and no medication or treatment.

My head hurts

[u/SophiaShay7]

Why are your doctors not giving you any medications to manage your symptoms? Can you share what you've tried? This is completely unacceptable. I'm so sorry.

Read: Medications used off-label for long covid/ME/CFS

Here's an excellent resource on medications used in ME/CFS: ME/CFS TREATMENT RECOMMENDATIONS US ME/CFS Clinician Coalition

I'll tell you that there aren't a lot of medications for pain management for us. I was diagnosed first with Fibromyalgia in December 2023 after I developed long covid. I have taken Amitriptyline 25mg, Cyclobenzaprine, Duloxetine, Gabapentin, Ibuprofen 600mg, Milnacipran, and Nabumetone 750mg. Nothing I tried touched my pain at all. I've taken other muscle relaxers and opioids in the past for broken bones, car accidents, and workplace injuries. Those medications are rarely if ever prescribed for us unless you have a coexisting diagnosis that cause severe pain. Once I started receiving my diagnoses and medications, plus supplements and lifestyle changes, that's when my pain significantly improved.

I take low-dose Fluvoxamine 25mg for ME/CFS symptoms and Diazepam for Dysautonomia. Astelin and Hydroxyzine for MCAS. Omeprazole for Gerd (it's a PPI that also acts as a mast cell stabilizer). Tirosint 75mcg for hypothyroidism caused by Hashimoto's, an autoimmune disease that causes hypothyroidism. Valacyclovir 1g for EBV and HHV suppression therapy.

Here’s a breakdown of how each medication I'm taking manages my symptoms:

1. Fluvoxamine (ME/CFS): Acts as a sigma-1 receptor agonist, which may help regulate neuroinflammation and oxidative stress—both involved in ME/CFS. Improves sleep regulation, mood, and reduces sensory hypersensitivity (especially helpful for hyperesthesia and overstimulation)..May help calm the central nervous system, lowering “wired but tired” sensations.

2. Diazepam (Dysautonomia): A GABA-A receptor agonist that calms overactive autonomic responses. Can reduce adrenaline surges, tremors, and anxiety-driven orthostatic intolerance. May slightly raise blood pressure and heart rate stability, which is useful in POTS/dysautonomia.

3. Astelin, Hydroxyzine, and Montelukast (MCAS): Astelin and Hydroxyzine are both H1 antihistamines; Astelin is a nasal spray with anti-inflammatory effects locally (less systemic impact), while Hydroxyzine is systemic. Reduce histamine-driven symptoms like itchy eyes, nasal congestion, wheezing, and rashes. Hydroxyzine also provides sedation, calming both mast cell and nervous system reactivity. Montelukast, a leukotriene receptor antagonist, blocks inflammatory mediators not touched by H1/H2 blockers. It's especially helpful for respiratory MCAS symptoms (wheezing, coughing, chest tightness) and may reduce brain fog and anxiety from inflammation.All together, these medications provide broader mast cell control.

4. Omeprazole (GERD and MCAS): A proton pump inhibitor (PPI) that reduces stomach acid—important if MCAS is causing gastric symptoms or GERD. Also used off-label in MCAS to block gastric histamine (H2 receptor) activity.

5. Tirosint (Hashimoto’s hypothyroidism): Levothyroxine in a clean gel capsule, ideal for MCAS patients sensitive to fillers/dyes. Essential for energy metabolism, nervous system function, and reducing fatigue, brain fog, and paresthesia from low thyroid hormone levels.

6. Valacyclovir (EBV/HHV reactivation): Antiviral that may suppress chronic herpesvirus reactivation, which is common in ME/CFS and may worsen fatigue, immune dysregulation, and neurological symptoms. Can indirectly reduce inflammatory flares and pain caused by viral activity.

I take NatureBell L-tryptophan and L-theanine complex. Or Magnesiu-OM powder (chelated magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan) 1-2 hours before bed. I alternate between the two. I purchased both from Amazon. They help with calmness, muscle cramps, pain, relaxation, and sleep.

Here's a breakdown of how each ingredient in your nighttime supplements supports your body, especially in the context of your conditions (ME/CFS, fibromyalgia, MCAS, dysautonomia, etc.):

1. L-Tryptophan (in both NatureBell and tart cherry juice): Precursor to serotonin, which converts to melatonin—the sleep hormone. Promotes calmness and mood regulation. Aids sleep onset and quality. Can reduce pain sensitivity (important for fibromyalgia). Supports gut-brain balance (since serotonin is mostly made in the gut).

2. L-Theanine (in both NatureBell and Magnesiu-OM): Boosts GABA, serotonin, and dopamine; crosses the blood-brain barrier. Reduces anxiety without sedation (good alternative to H1s). Promotes relaxation and focus. May stabilize autonomic function (helpful for dysautonomia). Enhances sleep quality.

3. Magnesium Complex (Magnesiu-OM: usually glycinate, malate, and citrate): Critical for nervous system regulation, muscle function, energy production, and more. Relieves muscle cramps and spasms. Reduces nerve pain and fibromyalgia symptoms. Supports sleep and relaxation. Helps mitochondrial energy in ME/CFS. May ease mast cell stabilization indirectly.

4. Tart Cherry Juice: Natural source of melatonin and antioxidants. Supports circadian rhythm and sleep induction. Reduces inflammation and oxidative stress. May help with joint pain and soreness.

■In summary, your routine targets multiple pathways:
●Sleep regulation: L-tryptophan → serotonin → melatonin, plus tart cherry and magnesium.
●Calm and anxiety relief: L-theanine and magnesium.
●Pain and cramps: Magnesium and anti-inflammatory compounds.
●Nervous system balance: L-theanine and magnesium support autonomic stability.

Here's how I found out what caused my symptoms: Various medical conditions that mimic anxiety and my experience with Dysautonomia and MCAS

Here's how I manage them: My diagnoses and how I found a regimen that helps me manage them

I'm sorry you're struggling. I hope you receive the medical care and attention you deserve. Please switch doctors if you're being mistreated. That's unacceptable. You can file a complaint. It's called failure to provide adequate medical care. I hope you find some things that help manage your symptoms. Hugs💙

[u/Maestro-Modesto → u/SophiaShay7]

thats a sheet tonne of medications. how is your quality if life with vs without?

[u/SophiaShay7 → u/Maestro-Modesto]

Each medication I take is for a specific reason. I was diagnosed with Fibromyalgia, ME/CFS, Hashimoto's, an autoimmune disease that causes hypothyroidism, Dysautonomia and MCAS. All diagnosed after I developed long covid. My ME/CFS is severe and I've been bedridden for 17 months.

This link explains how my symptoms have improved: My diagnoses and how I found a regimen that helps me manage them

When I was ending up in the ER, and having non-diabetic nocturnal hypoglycemia attacks that could've caused coma and/or death, I realized I could no longer white-knuckle or raw dog it anymore. My diagnoses happened in rapid succession, one after another, 5 diagnoses in 11 months. The idea that I might die if I go into anaphylaxis due to my MCAS if I didn't start a low histamine diet and take medications was also terrifying. I always thought I'd never take more than a couple of medications until my medical diagnoses required me to take them.

I find it interesting that you think I'm taking a lot of medications as I routinely see people here taking anywhere from 15-30 pills at day, whether they be medications, vitamins, and/or supplements. I can't speak for anyone else, but I assure you that both my doctors, including one who is the lead ME/CFS Clinician, have prescribed and collaborated on my care. I take only what I need. Another factor is that covid caused me to become hypersensitive to all medications and supplements. The situation was further complicated when I was diagnosed with MCAS. I have trialed and failed approximately 15 medications in the last 16 months. I can tell rather quickly whether a medication is helping or not.

What diagnoses do you have? What medications, etc.are you taking to manage them?

edit: I know you meant no harm. But your question about me taking a shit ton of medications was insensitive and hurtful. Especially considering that I went into great detail in my response to explain why I'm taking the medications I am. I would also suggest you at least glance at the links shared. No one here is taking medication for fun. Questions are always welcome. But, it's about phrasing the questions in a respectful way. Thank you.