How ME effects me

Part 2a of 4. In this part I discuss the background to my illness. Parts 2b,2c, 3 and 4 to follow.

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• me
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[mesufferer]

Great video, I can relate to the pain - for me it was like having hundreds of needles being pushed into my muscles.

Hope more people get to see this so they can see how it is, big hugs xx

[patrick3235]

It's really difficult to understand the kind of pain that you get with an illness like this which is in all probability neurological. It's beyond ordinary pain. It's a whole new series of sensations in my case. I honestly never thought my own body could do this to me. I guess its what happens when your body stops working properly as opposed to an injury or something like that. Hopefully we'll get an answer eventually. Best wishes!

[deadgirldreaming]

Thanks for your videos Patrick - the more we share this stuff the better.

I was interested to hear about your muscle spasm problems - I have been taking diazepam for years to try to help that and have just (today) started on Gabapentin (Neurontin) which I am hoping will help with that, the neuropathic pain and the brain symptoms - feel free to message me and remind me to let you know if it helps at all.

[patrick3235]

Thanks for the comment. I agree, the more we speak out and share our experiences the better. It would be interesting to hear how you get on with your new medication. I hope it all goes well. I might message you sometime if I can remember!

[SANDMANCASTHISSPELL]

Thank you so very much fo sharing from the heart.You make a difference to those who are fortunate enough to find your video. Thanks

[patrick3235]

I try to say something and it all comes out wrong! It's really frustrating because there is so much that I would like to say but I simply can't manage to.

[patrick3235]

It's probably worth adding that I have real problems expressing myself clearly. I think this is pretty common. On a good day i can express myself reasonably well for a short period of time. then the brain fog kicks in and i can't think very clearly. then my head begins to jam up and I need to take a prolonged rest before I can think about anything properly again. On a bad I can barely string a sentence together and have lots of problems remembering words.

[patrick3235]

Thanks for the postive comments. Actually I cheated! It took me a couple of months to type out what I wanted to say and then I taped it up next to my camcorder and read it out! I did try to say something without any notes but the brain fog kicks in and I just go blank. This is an everyday occurence for me. So notes and lists are the norm. Sorry to hear you have such problems with pain also. Hope we get an answer soon. Best wishes.

[gregcrowhurst]

Hi Patrick - your description of collapsing followed by intense burning pain is very familiar - I have been in constant allover pain since I first got really ill.

It is so important to share experiences and help each other and others to recognise and understand more about this illness. It is a dreadfully isolating illness and seems so hard to get people to comprehend the experience and the many losses imposed by it.Thanks!

Best wishes, Linda

[kaazoom]

The social problems caused by having ME are at least as bad as the physical symptoms. The fact so many in the medical profession refuse to accept it as a real neurological condition, despite numerous studies showing this is so, only makes things worse. My ME (if that's what I have got)is pretty bad. Most of my symptoms are neurological. Fortunately I am still able to maintain some level of socialising. I can go out of the house, never sure how bad the affects of it are going to be afterwards

[patrick3235]

Thanks for your comment. Hopefully I will be able to do something again, but unfortunately the longer this goes on and the worse I get the less likely this becomes. I keep trying though!