Hypermobility Syndrome and ME/CFS - I May Finally Be Near Having An Answer.

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.

Category:

People & Blogs

Tags:

• me/cfs
• fibromyalgia
• hypermobility syndrome
• Ehlers--Danlos syndrome type 3
• eds
• myalgic encephalomylitis
• double jointed

[CherylSpeaksOut]

Hi P, not sure you have all the answers here, however, you are more aware of more, you never been bedconfned? I never heard of anyone with M.E. that hasn't even for day, days after exertion, let alone weeks, months, years. what about the dyskenitic movements, and severe stiffness? clonzapam made difference. Spine houses cns, AND body organ supports, mine is very damaged ... had any decompression, de-gravity, or other back therapies? all best, me getting worse Namaste

[kaazoom]

@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 .

[kaazoom]

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!

[kaazoom]

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)

[ironbith]

I hope this is it! Crossing my fingers.

[kaazoom]

@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.

[missnana1015]

sorry~I know you are not Amy, it's iust typing is hard for me ,so I coppy the othe mssage that I left for the girl name amy who also has the same problem. sorry again

,

[missnana1015]

Hi Amy,My name is Ariel, I am 34 years old taiwanese. I have being struggling with the mysterious pain all over my body for two years. Until last week my Dr. told me I might have Joint Hypermobility Syndrome. Then I found your youtub. I know how you feel. Hope we can find a way to take of our body.

[SheWhoFeels]

Hey sweetie! You may very well be right! Have you seen @prettyill1 here on YouTube? 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! <3

[FallaciesDetective]

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

[GetWellFromME]

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

[essy111]

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

[neelubird]

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?

[DysautonomiaMD]

Wishing you the Best and letting you know that we love you!

[HELLandROSES]

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.