Treatment for my severe M.E./C.F.S | Leeds NICPM

Treatment for my severe M.E./C.F.S | Leeds NICPM

[@sue7621]

Hi Conor 🤗🥰 I feel for you being so young-I’m a retired RGN and was diagnosed in 2006 I’ve grieved the life I used to have many times my worst period was when I was on pregabalin the side effects were horrible it was when my daughter’s were getting married I was very sleepy and had a banging headache until I stopped talking them! I have found not over pushing myself even on slightly better days, being kind to myself and listening to calming music and meditation really help, getting enough quality sleep- Fresh air sunshine and taking Vitamin D3-k2 zinc and vitamin C Kefir cultured drink for good gut bacteria I’m on co-codamol and Duloxetine I do things to occupy my mind when I feel up to it /for me reading and needle work /photography on the better days- out in nature -just being! As a nurse I was in a stressful job -so stress I feel played a big part in my symptoms Everyone is different and everyone who is suffering from chronic pain and chronic fatigue-their symptoms are very real! I don’t tell many people these days because I don’t want sympathy but if asked or if I can help someone else then that’s good but sometimes people will say “but you look well “! They just don’t understand or maybe don’t know what else to say? Conor take small steps- I wish you all the luck in the world in your recovery journey! Positive mental attitude 🙌🙌🤗🙏🥰♥️

[@conorhope2307]

Thanks so much. I really hope you can feel a lot better soon, and thanks for your good advice 😊🙌🌿🌱

[@amaria1826]

It is amazing how you've progressed. I think being somewhere that the majority of your everyday tasks can be taken care of or at least assisted would majorly help many avoid overdoing things and getting worse. I know that likely was mostly at the beginning of your stay. The reality is that most don't have access to this type of thing, nevermind adequate healthcare and understanding. As much as I despise the biopsychosocial field and its proponents for everything they've inflicted on us it does appear that if handled rightly, with the psychological angle being supportive and not causitive (or curative) it could be helpful. Sadly most of us would have a hard time trusting anyone from that field. I've seen drs take the approach of advising patients to strictly rest for around 6 months (staying within energy limits) then gradually and carefully building activity, it seem facilities like this would be helpful for this as this can be very difficult or impossible to do at home with responsibilities, stresses, pressures and lack of understanding. Hopefully these approaches will be more widely accepted and advised in future but all doctors I've encountered still believe pushing and exercise is the answer making pacing infinitely more difficult for us. So I understand you saying we CAN recover, maybe if we had the right support that just isn't there yet for the majority of us. Still incredible to see your progress and I hope more people can benefit from similar in future or at least draw some hope from your experience. I assume you didn't have PoTs if you can now shower standing daily? Or is that another thing that's improved? I hope your recovery continues.

[@solitaryrena2688]

Have to admit as time went on I was getting concerned. I am blown away in how much difference this has made. I know you are the one that put in all the hard work but so relieved and happy for you that this did pay off. Even with Fibromylgia Doctors do find it difficult in pain management, there is no straightforward answers for that also, but glad you did stress it to them that it was also necessary for that to be acknowledged in order for yourself to make any progress needed. Each day at a time darling and I'm sure your Family are very happy you are back home. 🦋🤗💜

[@conorhope2307]

Thanks so much 🌿 Yeah, they didn't have all the answers, but definitely helped a lot 😊🙌🌱

[@mygranny4492]

Gr8 to hear your better! Well done!

[@13conker13]

Thanks for the update! Glad you are doing better. May you continue to improve

[@anxen]

I smiled with you, such great progress. fingers crossed it stays when you get back 🤞

[@kennylikesmusic]

always appreciate hearing from you

[@conorhope2307]

Thank you!

[@pancakemao6197]

hey I started watching your videos quite a while ago because I found them very inspirational. im so happy for you that you're doing so much better!!!! it makes me happy to hear :)

[@conorhope2307]

Thank you! Sending strength 💪😊🌿🙌

[@lyonheart84]

Glad to hear the improvements you've made physically Conor despite the continuing pain. I bet you can't wait to get back to your plants 😁

[@conorhope2307]

Thank you! Is it sad that I'm really looking forward to seeing my figs again...😅🌿

[@sjoerdvermeijden]

Glad to see you're doing well by the way. Keep up the good work!

[@conorhope2307]

Thank you! 🙌🌿😊

[@steveburrow8766]

Thanks so much for posting this. It was exactly the video I needed to find. Good luck with your next steps.

[@conorhope2307]

Thank you, you're welcome. 😊🙌🌿

[@jadaedwards4136]

This video is so encouraging to watch! Sounds like you are progressing nicely; hope increased pain relief continues to come along as well!

[@conorhope2307]

Thank you! 😊 🙌🌿

[@tavismcg]

Congratulations on making so much progress and thank you for sharing your experience.

[@conorhope2307]

Thank you, I really appreciate that 🙌🌿

[@irenes6627]

Hi Conor just came across your channel and I'm so happy I have! This is my 1st video of yours and I can see it has been the last one, I hope your transition to going back home has went well. Take good care of you. Xxxx

[@conorhope2307]

Thanks so much 🌿 😊

[@Leika11]

Nice to hear from you again. Glad you made at least some progress. Take care of yourself. Gabriela

[@conorhope2307]

Thank you! 🌱😊🙌

[@iammellbell]

You are hitting some really massive goals and improvements you must be working so hard, good job

[@conorhope2307]

Thanks so much! 😊🌿🙌

[@vs_vs16]

Good to see you improve ❤️

[@sue7621]

Your doing the right things Conor -👏👏🙌😘🥰🤗good luck 🙏♥️🙏

[@conorhope2307]

Thanks so much for your lovely comments 😊🙌🌿🌱

[@andyknights6552]

Hi conner so very good to see you and so glad to hear of your experience at hospital I'm amazed to hear of your progress even although you are still in a lot of pain hope when you go home you can keep at your functioning level you are very brave keep us posted what happens when you go home you look well and your voice sounded strong I'm not sure about the meds be very careful with gabapentin very strong drug and has very bad withdrawal I wish you every hope for your return home much love and once again great to see you Tricia knights fellow ME warrior

[@conorhope2307]

Thank you! 😊 🌿🙌

[@andyknights6552]

Welcome you keep fighting you should be very proud of your progress 💞💞

[@joyoung7804]

hi , ive just found your vids, thank you . i am a sufferer for over 30 yrs, m.e and fibro ,,, had major decline 3.5 years ago , i am waiting for admission to accute neurological rehabilitation , i was offered inpatient at leeds but too far for me so a psych hospital with a neuro ward near me , i am v worried about it so will be watching ur vids slowly next few days thank you im glad i found you xxx jo

[@kellysmith-may6889]

hi Conor.just started watching some of your videos today..I'm 6 months in from long covid/m.e/cfs..very depressed as I have lost my whole life..perfectly healthy and loads of energy before Xmas 2021,4 children just a busy mum and happy..I'm housebound and 80%bedbound,I cry everyday as I don't know how to deal with this..be good to talk to you 😊

[@irenes6627]

Kelly I have just joined Conor's channel and saw your comment. How are you feeling today? I have Sjogrens, Hashimoto's, Fibromyalgia and CFS. I have went from having a great career, social life etc to being housebound basically so I know how that isolation feels. I do have family but their in there 30's and I have beautiful Grandchildren and it breaks my heart that I can't do the things I want to with them. My mind never stops but my body has given up on me. Hope you see my comment and you are OK. Xxxxxx

[@kellysmith-may6889]

Hi Irene.Thanks for your comment.im truly sorry for the true suffering we have to go through..I have taken another dive and can only basically get out of bed for the toilet..I'm so fed up of living like this at just 38,4 children I can't look after..after the had the covid vax in April I further declined and now have severe body aches that painkillers don't touch,My central nervous system,immune system is ruined! I have severe sleep issues,my brain will not shut off and go to sleep ever,got to take meds everynight then wake up with zero battery for the day..people in my family and friends have said that it's just depression!! 😪😪😪 I'm severely depressed because my lifeless body doesn't have the energy and my brain is so foggy and cognitive issues..aww you have grandchildren? That's lovely and special but I get you 100% I can't do anything with my own children apart from kiss and cuddle..what are you able to manage in the home? Are you able to sit outside? Xxx

[@irenes6627]

@@kellysmith-may6889 Kelly that must be so hard for you all, the guilt I feel when I can't see my Grandchildren is awful so I can only imagine how you feel. Yes, we are depressed or have anxiety due to our circumstances, I did have queries bad Anxiety pre chronic illness but I tried to push through it (bad idea!) I too has the Booster in April and felt awful for weeks afterwards, our body must wonder what it is we have put in it I presume. I'm getting worse by the year, 4 years into chronic illness. Thankfully, I have the support of my family but there is times I know they don't full understand how unwell I am and to be honest before I was unwell I wouldn't have understood this illnesses either. Yes I have a garden that I do sit in but only for short periods then I come back indoors and lie on top of my bed. Obviously I can have good days where I can do a little more but I'm treading on thin ice now if I don't pace myself. Getting a bit scared of how my health is deteriorating with such little help on the medical side of things. Do you get help Kelly? I hope you do as I couldn't look after children whilst having chronic illness, I can barely look after myself at times. Managed to wash my hair today whilst in a shower sitting down, felt so good. X

[@conorhope2307]

So sorry for the delay. That sounds really difficult. I know it might not seem it, but things can get better, and over time we can get back to a better place. Sending strength to you 💪🌿

[@kellysmith-may6889]

@@conorhope2307 are you still bedbound Connor? I'm even worse than I was 2 months ago I'm 100% bedbound now

[@susanphoenix74]

So happy for your increased energy. Wish we had such places in the US

[@conorhope2307]

Thank you, yes we need more services like this. NICPM is the only place like it in the UK.

[@Leika11]

Hi Conor, i hope you are not to bad after all. Take care. Gabriela

[@flappyfish0319]

I pray for you bro your really strong

[@kellysmith-may6889]

as the months have gone on I've got increasingly worse..I really want my life back so much..I'm lucky I can message people,I can sit in the light outside for 10 mins or so,I can't talk for long as it's mentally draining,the fatigue is the absolute worst,brain all foggy,can't sleep without sleeping medication.. I'm so glad you have made so much progress..what are you like now a month on?

[@sjoerdvermeijden]

Faith Canter really helped me overcome CFS, I'd say i'm at 75% now. She has a free program. I'm sure you'll take away something from it.

[@babysheep2162]

This sounds amazing and I’m very happy for you!! Have other patients with ME improved as much as you or are there a lot of differences? I’m very curious

[@pancakemao6197]

Hey hope ur ok, urgh was having loads of good weeks then M.E. came bak bad. And was back in bed for a few days. So annoying.

[@roberthotlzclaw9012]

Love your story man and that you captured it. U may inspire me to do the same. Definitely disagree with the comments saying u just had depression, I think it's pretty obvious u have ME. That said I do wonder if mold may possibly have been a contributer to your case (and mold avoidance led to such stark implements). Have you ever tested yourself for mold? Hopefully it's not the case since your moving home but a thought that occurred to me. Blessings to you friend🙏🤍

[@conorhope2307]

Hey, thanks so much. I don't think it was mold as I have continued to recover back home. All the very best 😊🌿💪

[@jonnyburke4295]

🙏🙏🙏 Dear new friend, my name is John and I’m on the same journey as you are, so I empathize with you !!! For me I’ve learned that I must fight for my pain medicines, simply because my doctors here in the USA don’t understand. So keep fighting. Also, even though I’m not an MD , plz plz ask your doctors about Modafinil. For some it’s a good fit. Do your Google on it, for me it’s amazing and it helps keep me out of that 20-year BLACK hole I was in. May you find peace and joy with your plants John

[@conorhope2307]

Hi John, thank you, I appreciate the message. I will check out the drug you mentioned. I hope you can keep making improvements with your health. All the best, Conor

[@jonnyburke4295]

@@conorhope2307 Thank you for your kind note. As I progress forward, I would like to share with you in hopes that it will save you some stress !!

[@InsaneChef]

I am finally starting to feel better since 2018 and 2020 which were the worst years. I just wish I could strengthen more. I’m very impatient lol

[@conorhope2307]

Hope your recovery continues smoothly 🙌😊🌿

[@treecek]

ME/CFS is not psychological. I am a massage therapist for 24 years, and discovered the cause of it 2 years ago. If you want to come see me I can help you. Did you do a lot of biking or a repetitive exercise machine prior to onset?

[@judsonbates1359]

Have they addressed your gut microbiome? Have they mapped it?

[@thehardlife5588]

A new video

[@bzzzvzzze]

If I can recommend one thing to anyone, it would be just be naked in the sun. Sunlight really helps!

[@conorhope2307]

Definitely! Get that vitamin D through 15-20mins of natural sunlight each day.

[@linuxducky]

Out of curiosity, what have they done to help you do things like daily shower etc and other physical stuff like now being able to walk a kilometre ? 😊

[@conorhope2307]

Broadly speaking, it was a mix of medication (Sertraline, Quetiapine and Gabapentin), with gently increasing activity, physiotherapy and engaging in CBT therapy and socialising with staff and patients. They were lovely there, but it was still incredibly painful for me, and the pain remains high, despite my physical progress, so they didn't hold all the answers but have still helped me a lot.😊🌿

[@linuxducky]

@@conorhope2307 I'm glad to hear you're doing much better, and I really hope the pain gets better for you despite the positive physical progress 🥺I'd love to actually hear more about the physiotherapy etc, since I'm a bit more mild so I'd like to self-introduce some of these physical approaches, as well as stay in contact, do you have Instagram? 😊

[@conorhope2307]

Thanks, my insta is @bedboundbotany 😊🙌

[@c.k.1530]

Please try high dose Vit D and L Arginine Melatonin its what i gave my dad it helped alot

[@conorhope2307]

Thank you! Will have a look 🙌

[@youknowcrimedontpay9257]

All FM/ CFS/ ME patients are low in Vitamin D. Up the dose to 5000 - Five Thousand INU daily. Magnesium is very helpful for the pain as well.

[@frkk6933]

Maybe pregabalin helps...

[@youknowcrimedontpay9257]

Dangerous drug with terrible side effects. I tried it and felt suicidal.

[@buddhabinaural]

To anyone watching this, there is a treatment that the doctors and hospitals don't tell you about cos they can't make a penny from it. I have ME/CFS, 19 months now since Covid and I am finally improving gradually and here is how. Binaural beats. Binaural beats are listened to through head phones and aren't really a beat at all but rather a tone. What happens is if you play a different frequency in each ear within a certain range, your brain makes up the difference. So for example 200Hz in one ear and 206Hz in the other makes your brain create the 6Hz difference. Now to explain what this does, below 30Hz the sounds are such low bass that to humans they start to be vibrations rather than sounds. Speakers can't reproduce these sounds to just play them on a stereo, so binaural beats trick the brain in to creating this vibration frequency. At the right frequency this stimulates the nerves in your head. The fatigue from my ME is rooted at the tip of my neck muscles on each side where they terminate, which is basically on the soft bit just below the hard skull at the back of the head. It feels like this area is being crushed as if gravity has multiplied, or I am carrying a huge weight on my head and my whole body weakness and tiredness seems to stem from this point. The first time I found a good binaural beats video, after less than 10 minutes I could hear grinding and squelching from this pain area inside my head. I fell asleep with it still playing for a couple of hours. When I woke the pain had massively reduced. I have been doing this for weeks now going to sleep with my earphones in and my symptoms have noticeably reduced. My neck has also stopped squelching gradually as I have improved. The video I used (remember you must use headphones) you'll find in a quick search. It comes up in a search for binaural beats for fibromyalgia and has a purplish colour on the videos thumbnail with a big yellow rectange across it which reads rid pain all over the body. It has worked wonders for me. I have qualifications and extensive training in sound engineering, so inspired by my own problems and cures, I have created a binaural beat myself, which I am uploading tomorrow. I can't test it as well myself, as the other video I use has healed me dramatically and that squelching noise was always a good sign of a good healing piece of sound. Now I don't get as dramatic effects like the squelching, as the noises went gradually as I improved. If someone with severe symptoms can try my video and tell me if it helps, I would really appreciate it. I do feel that is doing me good but the difference isn't as huge as when I started this therapy. If my video doesn't help you then please search up that video I mentioned earlier. Although I am not cured it has dramatically improved my quality of life. To the point I'm frightened to stop listening each night for fear of relapse. Please give it a try, it has been life changing for me. My time bed ridden has reduced, my general activity increased. I need to lie down less often but when I do, those spells are getting shorter. I have had some bad days still but regardless of those blips my overall condition has improved to the extent I'm spending so bloody long now writing this in the hope it helps you too. My song to be honest is more selfish, I would be lying if I said I did it to help the world, I did it cos I love music production and to help me get better for my family but if it helps any of you reading this then great bonus. Sorry if this text is full of errors but it's 2:40 in the morning. I hope this advice helps some of you and if my video helps, then bloody marvelous, let me know. Wishing you all a good recovery.

[@Si-Toecutter]

Oh please we've heard all this BS

[@katy4763]

I see you in me and me in you. I've been doing this 32 years now. I can't type long. I want to talk. PLEASE try an anti-histamine PLEASE - if you have MCAS too then you will feel SO MUCH LESS PAIN in just hours or a day - and it's as simple as anti-histamines. It can't hurt but if it helps it will change your life as it did mine. I'm still bed-bound, but now I get periods of amazing ability to do. And always less pain. I'm in California and my name is Katy. I'm afraid to leave my phone number public. Maybe if you want to talk (and I understand if you don't), give me an email or some private way to forward it to you. Or, I can also call you. (Like you, I LOVE plants and miss my jungle home, Gabapentin helps, maybe I'll get off the opioids again one day - but now I'm on such a crazy low dose I'm not so concerned, blurry vision, and other similarities...) (I'm a kind, normal person who would never bother you with wanting extended communication - I just have some info that could be useful/helpful for you). In any case, all the best to you and I'm happy to see you moving forward. Feel free to have your mom call if that's better. Cheers

[@conorhope2307]

Thanks so much for the advice. My Instagram is @bedboundbotany I can't reply much right now, but can sometimes send quick voice messages 😊🌿🙌

[@beebee4334]

I’m a fellow sufferer and have some improvement with Antihistamines, too. For me, pain remains, but there is a good reduction in fatigue

[@conorhope2307]

Thanks for the tip! 🙌🌿

[@kellysmith-may6889]

which antihistamines please

[@katy4763]

@@kellysmith-may6889 You need to read and learn about it a little. There are type 1 and type 2 antihistamines. Some make you sleepy and some don't. You can buy them in stores and also get a script for the ones that aren't sold in stores. Testing for MCAS is tricky and finding a doctor who specializes in this is even harder. The best thing to do is just buy one and try it. Give it a week. You can try a different brand later to see how you like it. It's about trial and error. But if you don't feel a dramatic improvement right away then MCAS probably isn't an issue for you. Good luck!