All the things I've tried so far

I recently put data about treatments I've tried into Stuff That Works to help build their database. They're hoping to identify treatments that work for subgroups. I thought it might be helpful to share my big old list here.

I've split it up into categories to make it easier to digest. I've loosely divided it into 'pills' and 'techniques' although there is some crossover depending on what the category is.

I've italicised anything that I'm sure didn't work for me. To be fair, I don't know if cranial osteopathy would work for me if I could give it a proper go, but I was not well enough to keep going to the sessions. As you can see, almost everything I tried had some merit, or at least didn't make things worse. There's a lot which I am unsure if it makes any difference at all.

I'm still doing/taking a lot of the below. I occasionally come off a medication/supplement and see how I fare, but I've almost always gone back on the medication/supplement because I seem to do better on them. I find it very difficult to know if I've crashed because of coming off a supplement or because of stress/activity, so it's really not a perfect science, which I do find frustrating.

If it's in green, it means I feel it helped markedly. I've gone from being bed bound not able to send people messages on WhatsApp, to having a romantic relationship and being able to do weekly short walks. I'm still in bed most of the time but I can sit up more of the time, and I'm more able to spend time doing creative pursuits. I am the moderate end of severe or the severe end of moderate. I'd like to be able to leave the flat a lot more than I do.

PILLS

Anti-virals
Acyclovir

Hormone treatment
Levothyroxine, ashwaganda, combined contraceptive pill, mini contraceptive pill

Drugs affecting mood
Low dose naltrexone (LDN), weed brownies, CBD oil, CBD vape pen

Sleep
Phenergan, melatonin, Nytol, Kalms, sleep schedule

Anti-histamines
Fexofenadine, cetirizine, loratadine

Supplements
Iron, selenium, vitamin d, vitamin c, n-acetyl cystine, l-carnatine, luteolin, magnesium, cod liver oil, omega 3, PQQ, CoQ10, folic acid, d-ribose

Vitamin B12
b12 spray, b12 patches, b12 tablets, b12 injections

Pain relief
Paracetamol


TECHNIQUES

Symptom management methods
Clinic-run symptom management course, CBT (for coming to terms with needing a wheelchair)

Trauma
Psychosomatic psychotherapy, Trauma-Focused CBT, humanistic psychotherapy, expressing emotion, journalling, citalopram, sertraline

Mind-body therapy
Cranial osteopathy by a Perrin-trained practitioner, Trauma Release Exercises, reiki, massage

Movement
Physiotherapy, dance, yoga, hula hooping, singing

Regulating nervous system
Meditation, breathing exercises, qi gong, Kum Nye

Diet changes
Cutting gluten, cutting bread, reducing sugar, increasing wholegrain, increasing fruit and veg, increasing salad, increasing protein

Reducing and regulating activity levels
Careful pacing, rest, aggressive rest, regular timed rest through day, reducing work hours, stopping work, pushing

Improving environment
Removing mould from environment, air purifier, making my environment better (cleaner/prettier/easier/quieter/tidier), being in nature when possible

Elevating mood and reducing stress
Watching comedy, laughing more, avoiding sad tv, avoiding stressful people and situations

Challenging unhelpful habits/traits
Working on perfectionism, working on overachieving, increasing self love actions, working on phone dependancy

Educating myself around illness
Watching conferences/talks on improving health, learning about the science, learning about pain management, reading How To Be Sick by Toni Bernhard

Being organised and supported on the journey
Monthly check in with myself about how things are going and what to try next, online peer support, tracking symptoms over time (day-to-day and annual check-ins)

Finding meaning
Making art about my experience, turning my experiences into social media activism

Daily living support
Learning to ask for help, getting a cleaner, finding a neighbour to cook meals for me (costs covered through a charity)


I'm not sure I've found 'the thing' yet that is going to make me better. Here are some things I'd be interested to try in the future:
- functional medicine doctor that specialises in hormones rather than immunologist Dr Bansal
- EMDR
- Gupta/ANS rewire programmes
- other somatic therapies
- getting a PA
- Mickle therapy
- Optimum Health Clinic
- Neurofeedback
- Perrin technique/ cranial osteopathy when I'm well enough to try again
- oxygen therapy
- ayurvedic doctor
- energy healing

That's probably the order I'll be trying them in, too, if I can get access.

I am dealing with a lot of trauma too, so it is very possible that processing some trauma might be the thing that starts to turn it around for me. This is my current hope. Living with flashbacks and the somatic stress of trauma is not helping my body relax enough to heal sometimes.

Of course, my other big hope is the research that's going on: the OMF, DecodeME, and all the long-covid research. We are on track for getting a treatment that works within a few years, I believe. I have faith. In the meantime, I hope this list might give someone an idea about something new to try that might help a little.

Comments

Wow what a list.thanks for this summary.over what period of time have you done all this,how many years ?And have nothing helped so far ? I m suffering too from PTSD due to severe MCS .....ah just re-read the green ones did help you .never give up,i think your on the right track .
 
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@Irat thank you very much. Things have helped and I have made some positive progress, but I still would really like to be in a position where I could work and leave the flat whenever I feel like it. For a long time my aim was to have a romantic relationship and do more creative stuff, and I appreciate I have met that goal now, very much. I'm still striving for more though.

I've been sick 5 years. Mostly housebound for 4.
 

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