4 months of recovery after discharge from NICPM, Leeds | M.E/C.F.S and Fibromyalgia Update

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  • Опубліковано 20 сер 2024
  • A rather long (sorry) video just talking through how my life is now, around 4 months after discharge from the NICPM ward at Leeds General Infirmary.
    #cfsme #fibromyalgia #chronicillness

КОМЕНТАРІ • 56

  • @pamelasmith2625
    @pamelasmith2625 Рік тому

    So glad you are doing better. It is very difficult not to think of how you feel. Having so much pain in so many parts of your body becomes very overwhelming at times. I agree that keeping as busy as possible is important. I try to distract myself as often as possible. My Fibro is very severe now after suffering with it for over thirty years. I get new and worse symptoms every year. My friend (who has severe arthritis in her knees and hips) went out for a lovely lunch last week. She was hobbling with her cane, and I with my walker, but we had such a lovely time and some good laughs. It was worth the discomfort getting there as we both agreed that we didn’t feel our pain as much when we were eating our lunch in a very pretty little cafe and laughing together. I try to force myself to go out every day, even if it’s just to walk around a grocery store using a cart to help me walk. I can’t walk very far now without the aid of my walker, but I keep trying to stay as mobile as possible. It is important to laugh as much as possible. I watch funny tv shows and try to stay as positive as possible. I recently had a severe flare up which lasted over a month and was very disabling. I live alone but am very fortunate to have 2 wonderful sons, great neighbors and friends who keep in contact with me all the time. It can be a very lonely Illness so it’s important to stay connected to the outside world as most days we don’t want to get out of bed or leave our homes. You are doing a wonderful job setting goals for yourself. I feel so bad to see so many young people dealing with this debilitating disease. I started with it in my late 40s, although think it started many years before. I did have a very bad virus which lasted for nearly two months and doctors never could find out what it was. (I think it may have been Lyme) I was also in a very verbal and emotionally abusive relationship for many years and think this is what brought on my fibromyalgia. I pray the doctors and scientists find a cure for all you young people soon as it is such an awful illness with very little help for our pain. Please take care of yourself and I hope you continue to improve. Big hugs from Canada❤️🇨🇦❤️🇨🇦

  • @jessieadolf1923
    @jessieadolf1923 2 роки тому +2

    So thrilled that you are thriving. Thank you for sharing your recovery progress; it's a great encouragement for those of us with me/cfs. Hope you continue to improve.

  • @lessons9745
    @lessons9745 Рік тому

    My 19 year old son has
    " pots" I got him a E bike and he works Part time, take it easy and you can do it too!

  • @13conker13
    @13conker13 Рік тому +1

    Good to hear you are doing better. Been following your videos for a while now. Wish you the best on managing/living with the pain you’re still experiencing.

  • @steveburrow8766
    @steveburrow8766 2 роки тому +2

    Delighted to see your latest update, I've been wondering how you were getting on since your last. My daughter is a good few steps behind you and it's really helpful to see your progress (and the bumps on the way). Please keep posting when you can, it's much appreciated. Good luck with your allotment /volunteering /dog and all the other things that are filling your life.

    • @conorhope2307
      @conorhope2307  2 роки тому

      Thank you! I hope your daughter can continue improving. All the best 😊🙌🌿

  • @MusicMatters_SC
    @MusicMatters_SC Рік тому +2

    Good to see you doing so much better 👌🏼 you got this 💪

  • @jadaedwards4136
    @jadaedwards4136 2 роки тому +1

    So happy to see this update in my feed! It's awesome to see you doing so much better. Prayers from Atlanta, GA for your continued improvement and good health!

    • @conorhope2307
      @conorhope2307  2 роки тому

      Thanks so much! All the best to you too 😊🙌🌿

  • @angelahahn809
    @angelahahn809 Рік тому

    You give hope thank you Connor. Thank you so much

  • @InsaneChef
    @InsaneChef 2 роки тому +1

    I was tearing up wanting to cry in bed and then saw your new video 😃. I don’t have cfs but I get lots of muscle fatigue and tiredness from anxiety and hypemobility. Every day is so painful but I’m so glad that I can move around every day as I please. You are such an inspiration ❤️

    • @conorhope2307
      @conorhope2307  2 роки тому

      Thanks so much!
      So sorry you're in a rough place atm. Sending lots of support. I really hope things get a lot better soon.

    • @KidCity1985
      @KidCity1985 Рік тому

      What you feel is real

    • @KidCity1985
      @KidCity1985 Рік тому

      Yes you do

    • @Thelittleclipstore
      @Thelittleclipstore 3 місяці тому

      I have found alot relieve with doing Irene Lyon course it’s about becoming super intune with ur body and instinct. Balancing nervous system

  • @emo.grandma
    @emo.grandma 2 роки тому

    Thank you for sharing an update! Brings hope for some sort of recovery. 💜

    • @conorhope2307
      @conorhope2307  2 роки тому

      It can take time, but it can get better. Keep going 💪🌿

  • @emileconstance5851
    @emileconstance5851 2 роки тому

    Incredibly happy you've been making steady progress toward recovery--and credit to you for being persistent and putting in the work, when I know that some (many) days one feels like giving up. Thank you for this video and all the others (including your Instagram updates, which were very informative). Your story is inspiring for so many of us, and your insights are also invaluable. Take care, and continued progress. Always wishing you the best! --John
    (Never worry about replying--I understand, and I think we all understand; just grateful you've been able to share as much as you have, as it's very helpful and inspiring.)

    • @conorhope2307
      @conorhope2307  2 роки тому +1

      Thanks for the lovely message 😊🙌Hope things continue to improve with you too.

    • @emileconstance5851
      @emileconstance5851 2 роки тому

      @@conorhope2307 Thank you--hope I'll have a recovery story I can share one day. 🙂

    • @conorhope2307
      @conorhope2307  2 роки тому +1

      I'm sure you will 💪

  • @suzannax
    @suzannax 2 роки тому

    I'm so happy for you, the progress is amazing. Well done🥳 👍

  • @andyknights6552
    @andyknights6552 2 роки тому

    great to see yoo happy for your progress keep on doing well much love well done on your journey I've watched your videos since the beginning you've come a long way keep fighting X Patricia knights

  • @marinadurrant6322
    @marinadurrant6322 2 роки тому +1

    Hi Conor,
    Lovely to see you looking so well, and now you have a life back! I'm very happy for you 😊
    When you were not so well, was fatigue and post exertional malaise symptoms that you experienced?

    • @conorhope2307
      @conorhope2307  2 роки тому +1

      Hey, thank you!
      Yes I experience (and still do, but not as badly) PEM and fatigue. My PEM also has the same pattern with my pain, an activity can cause a delayed flare up in the pain, usually alongside some fatigue also.
      Hope you're doing well
      🌿

  • @susanmargaretwills6432
    @susanmargaretwills6432 Рік тому

    Hi doing gardening isn't only good physically - 3 things that help with depression are (1) Raising a Child (2) Keeping a Pet (3) Growing a Plant

  • @joshs2444
    @joshs2444 2 роки тому

    Hey man I'm really glad you're doing a lot better! Its a huge milestone as I know the dark depths this disease can take us. It's great to see some light even if we're not operating at the full level we once used to be. I was wondering have you ever discovered what you got infected with in the first place that kickstarted this illness? I have ME/CFS and have discovered that Lyme disease and the coinfections is what I initially got infected with. I thought some sort of virus is what officially did me in but I tested negative for most of the viruses. However when I got tested for tickborne infections using high sensitivity testing it came back positive for multiple strains of Borrelia along with Bartonella, and Anaplasma. I suspect many ME/CFS patients are harboring these pathogens given the great similarity between chronic Lyme and CFS and how they are both typically dismissed despite being real. I don't know how prevalent Lyme is over in England but I do know that Borrelia spirochetes are in ticks over there. In fact its all over Europe there's just different species compared to the ones in America generally. The treatment, testing, even recognition of ME/CFS and chronic Lyme is abysmal here in America like in most places despite Lyme disease being very prevalent with cases rising each year in the Northeast. If you do find someone who will test and treat for Lyme and the coinfections it might help your situation because the only thing that has helped my ME/CFS of any significance has been taking antibiotics which I credit to getting me out of bed. I'm still very much non functional but Im hopeful that I can get fully better. I do think the mind-body connection is powerful as with any illness whether it's common or not, can make a big difference in health and recovery which Im trying to work on. I just thought I would mention this because I'm not sure if England or the UK regularly considers or even screens for Lyme over there. I used to volunteer at a nature preserve in High School before I got sick a couple years ago and have had a couple ticks on me in my life so it makes sense that I would be exposed to these pathogens. Since you love botany and horticulture you may have been exposed at some point if you spent time out in nature or with animals. But I wouldn't fully know. I do agree that we shouldn't get stressed out or overwhelmed by all the possibilities because it really can be endless sometimes. But I thought I would throw this out there just given my expereince with this and any potential that it could help. It just blows me away that even though the US. has the highest amount of cases per CDC, it still generally goes undiagnosed in people due to the myriad of symptoms and bad testing for it which usually comes up negative. So I would wager Europe probably isn't much different despite them having better healthcare than the U.S. generally speaking.

    • @conorhope2307
      @conorhope2307  2 роки тому +1

      Thank you. For me it was a gradual onset, so I can't pin point any particular infection, but for many people, it is a virus or other infection that can trigger that response.
      I guess I put a lot of pressure on myself academically and physically, and in combination with my crappy immune system, and my sensitivity, I guess it was too much for my body.
      I really hope you can make some progress soon, keep going, it can get better 🙌🌿💪
      All the best from the UK

  • @Grynkify
    @Grynkify 2 роки тому +1

    Love that you are back, How does the medicine works for you? What do they do on a personal level? What explanation did they have for your ME/CFS symtomens?
    Definetly recognize myself when it comes to overthinking, but at the same time it is a normal reaction when you don’t know whats wrong right?

    • @conorhope2307
      @conorhope2307  2 роки тому +2

      Essentially, they think that for me at least, but also for many people with M.E/C.F.S that it is largely caused by central nervous system disfunction, and over arousal.
      The medications are meant to dampen the central nervous systems activity, which hopefully means patients feel less tired and/or less pain.
      However, they also know that there are probably other underlying issues too, and when I went, they did a load of blood tests, pressure, heart rate etc etc. Then depending on what they find, they tailer their treatment to match the person's problems.
      Yeah overthinking is completely natural, and in a way it would be weird if people didn't overthink. But when the brain is in that sort of threatened state, it can't properly rest and relax.
      Hope that helps! 😊🌿🙌

  • @jackf8450
    @jackf8450 Рік тому

    Just finished watching your videos and puts my own issues into perspective and gives me hope that improvements are possible over a longer period of time.
    One question why aren't you on LDN? A lot of other mecfs people use it for pain and some for fatigue.

  • @igantiusfaraday5149
    @igantiusfaraday5149 2 роки тому

    Ahh.... Brilliant. So pleased for you... I really am. 😁👌👌👏👏

    • @conorhope2307
      @conorhope2307  2 роки тому

      Thanks! Hope you're doing OK, saw your comment on Traceys post, so sounds like things are moving forward? 😊🌿

  • @cfs1046
    @cfs1046 Рік тому +2

    if the doctors didn't think you were suffering from anxiety and severe depression you would never have been given the drugs you have been given. you have very heavy doses of antidepressants and anti-psychotic drugs and since you have been helped, it is proof that the diagnosis was correct. It is nothing to be ashamed of because there are many people who suffer from mental illnesses. You don't have to call it ME for you to be accepted. it's ok though. 🙏

    • @Sigge2017
      @Sigge2017 Рік тому

      The sad thing is that you become impotent like a zombie on these medications.

    • @KidCity1985
      @KidCity1985 Рік тому

      Antidepressants work on me/cfs

    • @cfs1046
      @cfs1046 11 місяців тому

      @@KidCity1985 No but on depression

    • @cfs1046
      @cfs1046 11 місяців тому

      No but on depression

    • @cfs1046
      @cfs1046 11 місяців тому

      @@KidCity1985 No but on depression

  • @GhostSubstitute
    @GhostSubstitute Рік тому +1

    Question. Sir, did you have MCAS?

  • @cet9374
    @cet9374 Рік тому

    Can you list your symptoms (PEM etc)- and what was your onset? Etc

  • @Wildcat_Hellcat
    @Wildcat_Hellcat 2 роки тому +1

    You're looking good Conor, thank you for the update. What was the medication, if I may ask?

    • @conorhope2307
      @conorhope2307  2 роки тому +1

      Thanks!
      200mg sertraline
      250mg quetiapine
      12 x 300mg gabapentin
      60mg amitriptyline
      And ibuprofen and paracetamol as needed 😊🙌🌿

    • @emileconstance5851
      @emileconstance5851 2 роки тому

      He mentions the medications and doses in the video.

    • @hannelemoilanen409
      @hannelemoilanen409 2 роки тому

      This is wonderful! I'm so happy for you 😊.

    • @conorhope2307
      @conorhope2307  2 роки тому +1

      Thanks! 😊🌿

    • @Sigge2017
      @Sigge2017 Рік тому

      @@conorhope2307 The sad thing is that you become impotent like a zombie on these medications.😢

  • @crossercuss1
    @crossercuss1 Рік тому

    do you have any tips for brain fog?

  • @atanaban
    @atanaban 2 роки тому

    Hello Conor, I have been suffering from what I thought was me/cfs until I got COVID 3 weeks ago and was hospitalized for one week. While I was there the doctors discovered that I had an underlying condition which they believe to be adrenal insufficiency. It’s considered rare and many doctors don’t know about it but the symptoms are very similar to me/cfs. Have doctors looked into your morning cortisol level at the very least? I still have a lot of testing ahead of me with an endocrinologist to determine whether it’s primary, secondary type and so forth but I wonder if many me/cfs people might have undiagnosed adrenal insufficiency. I really want to spread the word.

    • @atanaban
      @atanaban 2 роки тому

      Also, taking hydrocortisone and fludrocortisone has made a huge difference for me which is standard treatment for adrenal insufficiency.

    • @conorhope2307
      @conorhope2307  2 роки тому +1

      Thanks so much for the advice, I don't know if they checked my cortisol etc, but I did have what seemed like every blood test under the sun!
      I think many peoples mecfs is probably a combo of load of different things, and maybe one of them is adrenal fatigue.
      Hope new research looks into it all more soon.

  • @Rehabmotivator
    @Rehabmotivator Рік тому

    Good luck on the day you stop taking your meds. you will be worse than before you started them and it will take years of abstinence.

  • @eddie8489
    @eddie8489 11 місяців тому

    Did they identify a root cause?