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- เผยแพร่เมื่อ 24 ก.ย. 2024
- I have had nealy 2 weeks of much improved mobility. I think I may have found the cause of all of my strange symptoms and they could all relate to a condition I used to regularly see a consultant for when I was a child. I think the pieces of the puzzle might finally be coming into place.
This might be a bit premature but I am so excited that I ight finally have the answer to my health problems.
Wishing you the Best and letting you know that we love you!
Hurrah! You look so well! Go Kaazoom! I really hope you figured this out once and for all and have fixed yourself. I'm sure this'll be relevant to loads of other people. I hope your doctor listens and refers you. They should really do a case study of you and use your TH-cam videos as documentary evidence. But alas, what are the chances! Well done!
So great to see you!!! Have missed you and how great!!!! you can go for walks. Makes me want to get out of bed! Thank you so much for touching bases with us...and you look GGGRREAAATTT!!! How nice that your Path is leading you down such a nice road. You look Awesome!!! And it makes me so happy to see your wonderful face! LoLv.
Hi Paul, I'm so glad you finally feel closer to finding some real answers. I know lots of people on the ME forum who have hypermobility syndrome btw. My guess is hypermobility is a significant part of the puzzle but not the whole puzzle and I'm very suspicious of what went wrong when you had the flu jab.
Just cos' stress exacerbates your symptoms, it doesn't mean your problems are psychological- otherwise your symptoms would disappear when you're happy right?
Myself and other Ehlers-Danlos/ Joint Hypermobility Syndrome sufferers, that I know of, have previously been diagnosed for our multiple health problems with I.B.S. Fibromyalgia, Chronic Fatigue etc. E.D.S./J.H.S. is a collagen problem, a connective tissue disease. My organs are fine, it's what is supporting them that is faulty. You have hit the nail on the head regarding the M.R.I. Well done for a great vid and thank you for sharing. Let us know how you get on.
Let's hope that the mystery is being solved. Good luck kaazoom
Kaazoom: Like you, I have both CFS and EDS. It's funny how we've had to figure out so many things on our own. I too struggle with my posture--such a tiring chore! We all have a similar medical puzzle to solve and work so very hard at getting diagnosed. Doctors should be able to spot us quickly, yet they often fail to see what's right in front of their eyes.
You look great!
@ironbith Thank you. It is looking promising. There is no cure, but at least it is taken seriously, which is more than can be said for ME/CFS.
@CherylSpeaksOut I am really sorry to hear you are getting worse Cheryl. :0( The fact I've not had a day in bed since being ill has always been a soure of doubt to my ME diagnosis. there is still much I do not understand about my 5 1/2 years of ill health, and may be i'll never fully uderstand it. I am even beginning to wonder how much my illness may have had a psychological aspect to it, I really don't know. But apart from a few moments when body won't work well, I'm continuing to improve .
Hi! Please could you let us know what the best videos you found about posture etc were? I've found when I've paid attention to my posture that other things (aches and other symptoms) "slot into place" slightly better than when I'm not. Best wishes
Stopping by to see you again.....btw you look Great!@!!!_$(*%&!!! You are such an inspiration and we LOVE to see you better!!!! LoLv.
I have hypermobile joints, POTS, and CFS. What you say makes sense. :o)
continued,.. I have noticed my posture is a bit rubbish and feel things clicking into place when I straighten up! I'm going to try this from now on and see if it makes any differences. I've also been told to try very gentle Pilates to help get the Autonomic nervous to get back to normal. I also don't deal with any stress well at all and this is also due to the Autonomic nervous system.
Thank yu for all f your encouragiing comments. Things are still going well. I've had a few moments when my body has stopped working properly, ut other than that I am doing very well! I said in the video that I may be fooling myself about how much posture seems to affect my gait, imparticular bending my neck. I think I may have been fooling myself. I've been walking fine with my neck bent. The only time things got bad was when my GP was dismisive again and I got angry and frustrated!
I recommend a really good book to get by Janet Hurrel, the books called THE JOURNEY THROUGH ME/CHRONIC FATIGUE SYNDROME. its an A TO Z book packed with the best information ongetting over any nasty illness related to ME etc. I also recommend getting Licorice root powder from Neals Yard its great for energy levels. And theres this new remedy out by using the power of your mind to get well and this is called THE LIGHTENING PROCESS
That has made me wonder how much of this has been psychological all the while and I have been in denial. If that is the case I feel a bit foolish. All I do know is my symptoms have been very real to me and have at least seemed to not be under my control. But it is probably too early to be sure at the moment. Time will tell if my improvement lasts and I end up back to normal, whatever normal means :0)
Hey sweetie! You may very well be right! Have you seen @prettyill1 here on TH-cam? She's a doctor and a patient & has done some amazing research in these comorbidities! She all has a website too. Don't give up love! I'm praying for you!
Hello, i know i´ve just been diagnosed wiht hypermobility, i have surgerys in my neck and both knees, and a lot of posture problems related...does anybody knows or have tried prolotherapy before, in theory there are injections of an irritant such as dextrose that promote inflamation and proliferation of new cells, collagen that helps build stronger ligaments, is a bit painful but, in theory it seems to work, does anybody have tried this?
How are you, brother? I pray for you and us patients, that God would give us wisom. The Bible says that God loves to be asked and he loves to give wisdom to those who trust him. I pray also that He makes us able to trust Him. :O)
Mikel
I will never giveup til I find the answer to the me/cfs!
I hope this is it! Crossing my fingers.