u/lockdownleadmehere

I want to use some acrylic markers to draw a sunflower on some brown cotton fabric. It needs to be opaque and blendable. I’m also planning to embroider over it too! Has anyone done this? What range do you recommend? Thanks!

I came across Harpal Clinic, they prescribe LDN, have a longevity clinic and have a functional medicine branch that specifically mentions ME/CFS. They state ME/CFS is a biological multisystem condition. They prescribe LDN for ME, list some functional tests for viral detection, mitochondrial testing, gut health, environmental chemical testing and mycotoxin testing. I’m quite apprehensive of functional medicine but I know it does help some people and some of it is useful. Interested if anyone has had any experience with them

I’ve been looking into B12 deficiency, specifically paradoxical B12 deficiency.

Were there any symptoms that stood out? What tests did you get done? Were your labs normal? Did you go straight in with injections? What form of B12 helped you?

My serum B12 is high, but I’m looking at getting an active B12 done. I’m wondering if B12 deficiency is a contributing factor to my overall ill health but as I’m learning it’s not a straight forward thing to find out. Curious of others experiences!

I’ve had a lot of health problems over my life (I’m only early 20s 😭) and I’m wondering if B12 may be a contributing factor. Quick summary of my health, I have had ME since my childhood and have had a relapse remitting pattern, I have migraines, developed PCOS and POTS in my teens (still awaiting diagnosis for POTS but it’s pretty certain), last year during a period of remission I had a very bad virus possibly covid that has worsened everything. My remission ME became severe overnight, I had hairloss, my POTS has become progressively worse and I have chronically low BP, I’ve developed a plethora of allergies and intolerances due to MCAS, have had unintentional weight loss at multiple points. I also have joint hypermobile spectrum disorder.

My labs, to my doctor do not indicate a B12 deficiency as my serum is actually above the normal range but another doctor said I could always pay privately for an active B12 test. My iron is normal but my ferritin is high, likely to be related to inflammation in my body. Folate is within the normal range too. My thyroid levels have been odd, last year my serum TSH was slightly raised, a few months later it was within the normal range but my Free T4 has been slightly raised since the second blood test I had done, it’s still raised slightly I had it checked a few weeks ago. I’m still learning about B12 deficiency and have read over the guide here plus some other resources. My understanding is that an Active B12 test can pick up a deficiency but it doesn’t rule it out, there are other tests but it’s the same thing with them, does not rule it out. The only definitive way is to get injections and see if anything improves but it can make you worse first or you might have to balance other vitamins and minerals first and then you might need to find the right type of B12. So not very straight forward.

My symptoms are multi system and all of them are possible symptoms of B12 deficiency, or it could be down to the illnesses I do have. I’m confident my diagnosed illnesses are accurate, however the amount of symptoms is 1. Overwhelming and 2. Difficult to keep track of in terms of what illness is causing what. The symptoms that are new from the last year and raised suspicion for me that I could have a B12 deficiency: I’ve had periods of numbness and tingling in my extremities, my fingertips have turned blue, that could be down to medication I take for POTS (propranolol) but I’d never had it before. It comes and goes. The hairloss could be down to PCOS or the virus I had but again I’m not sure again new for me. I’ve had incredibly heavy periods the last year, again it could be PCOS but it’s new for me. I already had heavy periods but now I’ll easily bleed through large(!!!) pads and multiple layers of clothes in an hour. My thyroid levels being funky. Slow wound healing, new and constant. Extremely painful periods intermittently, sometimes I have a low pain one others I am unable to move, this started a few years ago with no explanation. Those are just my new symptoms, I still have the usual fatigue and PEM, pain, OI, dizzying, tachycardia, cognitive dysfunction etc etc all of which has worsened over the last year. My doctor is aware of all of this. In previous relapses I’ve always felt like I was “healing” gradually and improving but this time I haven’t felt like my body is trying, it could be due to the additional worsening of POTS or the MCAS or possibly B12?

I’m exploring a lot of options just now and have saw some improvement but I’m still very disabled, housebound and unable to care for myself. I want to reiterate, I think all my diagnosis’ are accurate, but I’m exploring if B12 is a contributing factor and a possible cause of the symptoms I mentioned above. I need to be selective about what theories I invest energy and finances into as both are heavily limited. Having a venous blood draw really impacts me, myself and my doctor try to be careful/conservative about the necessity of additional tests. I’m fine with fingerpricks though which makes the Active B12 more appealing than a full MMA and Homocysteine. To add, I’ve been vegetarian since I was a kid, I’ve took a multivitamin intermittently over the years that includes B12

I’d be grateful if anyone can point to anything in my blood results that would indicate a B12 deficiency or any symptoms. I appreciate this is a long post so thank you for taking the time to read it 🙏

Edit, forgot to put a tw for food and diet, sorry!

I came across the Long Covid Dietitian and she offers a course and appointments but on a waitlist. Her testimonials are glowing but I’ve also seen individuals saying how much they’ve improved with diet changes thanks to Long Covid Dietitian (these don’t seem to be sponsored or promotion). The people I see have a mix of ME (unrelated to Covid), POTS, MCAS, and different types of Long Covid including ME. I’ve developed MCAS so my diet is completely up in the air and dependent on what I can tolerate currently. I’m interested if anyone has worked with her, what was your experience and was it worth it? Thanks :)

Ok I swear I saw a post somewhere, a woman was using what looked like a tuning fork hooked up to a device that was using electric pulses to stimulate the muscles and try to get the mechanism working again to stop blood pooling. She talked about compression too. I never saved it but I’m quite interested in this, has anyone seen it or tried it? Thanks!

I’m looking at starting my own small business. Not advertising it just wanting advice from anyone else who has managed to do it.

My plan is small diy kits I can post out. The most physical thing will be taking the parcels to a post box or other drop off site. Other than that I in theory can do everything from bed. I’m currently moderate, have a little bit of brain power for a small amount of time every few days. The initial start up seems like the most energy intensive with design, testing the kits and generally finding my feet with it.

I really need an income and getting a job just seems way too unrealistic. If I am my own boss I can plan things better and align any business goals with how my health is doing. Even while I was mild I always wanted and thought running my own business would be the best option.

I’m starting to think about moving out.

The people I live with have become untrustworthy and I’d like to have a period of no contact while I try to get my health under control as they are causing immense stress.

I’m moderate recently moved up from mod/severe, can’t cook independently, wash my hair, leave the house or do general house stuff. I get disability payments but that’s no where near enough to live alone. I have savings that means I cannot receive unemployment payments.

How did you manage to move out, if you live alone how do you manage it? Any advice welcome. I plan to stay in the current situation as long as I can as it gives me more time to try and sort out a plan. 💔

My primary caregivers have lied to me, they got a hold of my medical information without my consent, took it to a doctor I still don’t know the name of and got medical advice I didn’t need as this had already been reviewed by THREE OTHER DOCTORS. They went because they didn’t believe what I was telling them. I’m absolutely heartbroken. I can’t be in the same room as them or have a conversation without feeling angry and upset. It’s been almost a week now. The stress has sent my MCAS haywire and I’m reacting to even safe food. My pain has increased so much and my sleep has just gone downhill after getting it to a reasonable point (months of a lot of effort).

I’m moderate to severe, but I’m looking at possibly moving out from them. I just don’t know what else to do. I’m scared of how the move will impact me but this environment isn’t sustainable. They have done stuff like this before but they’ve never gone as far as obtaining my medical information without me knowing, I’m now worried about how far this escalates as they’ve shown nothing to indicate this will change. And they won’t take any effort to learn about my ME, POTS or MCAS 😔 but will spend over a year on this “side project”

I’ve had a really difficult year and this is just breaking me more than anything else. I’m even having nightmares about it. I could really do with some kind words just now

I’m still very new to this, I’ve been on a low histamine elimination diet for about 2 weeks and have felt significantly better. Also on fexofenadine 2x a day, famotidine 1x a day and ketoftifen 1x a day. I’m using the SIGHI list for my diet. My next check in appointment is a few weeks away and all of this is being done under medical supervision!

I had my usual safe breakfast of overnight oats, milk, chia seeds, ginger and a spoonful of male syrup. I had a snack of rice cakes with soft cheese that had been open a day or two but still safe to consume. For dinner I made mac and cheese, fresh mozzarella, milk, plain flour, butter and garlic. Straight after eating dinner I felt itchy, had stomach cramps and then diarrhoea :/ my heart rate was high and I had joint pains. I checked over the SIGHI list and all of the food I had is “safe”. It was also a low pollen day.

Have I overlooked something? I’m really struggling to figure out what the likely trigger was, and I don’t want to have to waste the frozen mac and cheese if it wasn’t that 😭 I’m feeling pretty overwhelmed and just so unsure about what caused it

ME Action Scotland are running an email campaign this week, the goal is to introduce new MSPs to ME and remind returning MSPs that we’re still here and how they can support us! They are encouraging anyone who is able to email their new MSPs to do so. Link to article and email template at the bottom of this post! Personally I’ve had successful experiences with emailing my MSPs, some of them have wrote to the health board for me and among other things. They work for you and it’s their job to represent constituents concerns, the more of us who email the better!

Email template: https://meaction.org.uk/media/template-email-for-msps-may-20261/Template%20email%20for%20MSPs%20May%202026.pdf

Link to article: https://meaction.org.uk/news/2026/05/me-awareness-week-2026

I bought a pair of jeans second hand a while ago but didn’t notice they had a period blood stain on them! I’m usually quite good at getting stains out but I’m a bit stuck with this one. I used bicarbonate of soda, dish soap and a tooth brush to really scrub the stain, left it on for about 6 hours, hand washed in cold water (machine is broken currently) and…. It done nothing! Not even faded! The water was super murky too. I really want to save these jeans but I’ve never had a stain this stubborn :/

My next thing to try is an oxy clean stain remover, I have household ammonia too to try (not sure the best way to use it). Am I on the right track? Any suggestions?

I had some unavoidable PEM, it hit about 8 hours after the exertion and I just went into hibernation mode. I’m doing better today but my mood is in the trenches and obviously have lower energy plus a flu feeling, when I’m at my baseline I’m generally quite happy and content despite my situation of mod/severe ME and being housebound. On the plus my walking ability returned quite quickly!!!

Currently, it feels like my head has so much pressure, it feels sharp, hot and spikey. It feels like I’ve been hit very hard in the head. My neck hurts and aches. I feel extremely pessimistic, depressed, angry and anxious (I know it will pass, I’m not in any danger).

I guess I just want to know if anyone else gets this? How long does it last? Any way to help it? Do we know what this is, like increased neuro inflammation, is it the lactic acid etc etc? Please remind me it will ease up eventually