I have that. it is a congenital disease and i have the one that affects the cervical spine. I jist had surgery to help alleviate constant pain and numbness and tingling in my left arm, but i am still in pain and i am being woken up by it and kept awake. My partner is not good at being supportive about the whole thing. It really sucks to decline so drastically in my early 30s. I was a healthy person that spent 8 hrs a week in the gym and worked 45 hours a week. Now it hurts if i sweep up a mess I made or try to wash some plates. It is hard to see a point to life for me. I went to a prestigious university for musical performance bit i cant even play my instrument now either. I just feel worthless and sad. If i tell my partner even a light version of how i feel the tell me they "cant take this right now" and also they separately complain about how no one is helping them and how messy we make ojr house (referring to me and my child). I know that what she says is pretty much entirely out of line especially stuff like the latter... I just want my child to have as stable a childhood as possible. It makes me 10xs sadder that i cant do anything with my child, but i probably engage with them more than my partner. Like TAKE THIS KID TO THE PARK OR SOMETHING. My partner has anxiety issues but it really feels like we are failing my child and that compounds my situation a TON and i have NO CLUE how i can resolve any of that. Sorry kind of a strange combination but my entire life is upside down because of my KFS... i have trouble just carrying on each day.
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Klippel-Feil Syndrom
- Thread starter psmith222
- Start date
Sorry that you're going through this @psmith222
It's understandable that KFS is having a profound negative impact on your life. I hope there's a way that things could get better, for your own sake as well as for your family.
When did you first start feeling the pain?
It's understandable that KFS is having a profound negative impact on your life. I hope there's a way that things could get better, for your own sake as well as for your family.
When did you first start feeling the pain?
it has been a month since the surgery. I have a follow up appointment in a week and a half. It is a situation where the surgery was necessary to do at a younger age anyway as I only had 1 disc and one point for movement for my neck. The pain has been there for years but the constant nature started about a year ago at this point. I have been confined to very little movement for so long the time... Now my entire cervical spine is fused with a plate, but the doctor was hopeful that I wouldn't have reduced mobility in the long term. I would say the pain was like an 8 without pain meds for the three months up to the surgery. I am down to like a 5 or so if I don't move all day. If I spill some packing peanuts or pick something up like a trash can to empty into a bag, it will skyrocket for a good 2 hours or so.
Thank you for sharing.....I'm trying to imagine those 7 vertebrae fused together and how moving your neck would be after already being with just one point of movement there for so long. I hope that there is improvement of some kind over the next weeks and months to relieve you of the pain levels you are still experiencing and give you back some ability to move and mobility without spiking your pain back up.
Is it the sort of thing where even if you knew for sure that it would be much better in a few months, it's still bad enough in the present to make you feel suicidal?
There are a few other members here dealing with chronic pain, I could tag them so they could see this thread.
I don't know if you want suggestions, but there may be a few things that could help that would be worth trying.
There are a few other members here dealing with chronic pain, I could tag them so they could see this thread.
I don't know if you want suggestions, but there may be a few things that could help that would be worth trying.
That would be nice to have suggestions about chronic pain. If I KNEW it would go away i would be fine to tough it out... It really only took about 3 months for me to just feel beaten into the dirt. Like i cant see which way is up and i dont have the energy to hope kind of feeling. Chronic pain is no joke and especially right now i have no pain meds besides muscle relaxers and tylenol. I live 50 minutes from the nearest doc and the car ride HURTS and i dread it.
Some information in these links might help:
Chinese Herbal Medicine and Acupuncture, World's Second Largest Medical System
Self-Treatment and Miscellaneous
Acupuncture can help with a lot of pain conditions. If you're 50 minutes from the nearest doctor though, you might also be a long way from the nearest acupuncturist. Telemedicine appointments are possible, and I could give you some information about that if you are interested. They would be able to give you advice about acupressure self-massage.
I wonder if you could wear a supportive collar that would make travel more comfortable
@Callumin @1964dodge and @Joerider101 might be good folks to talk to about chronic pain
Chinese Herbal Medicine and Acupuncture, World's Second Largest Medical System
Self-Treatment and Miscellaneous
Acupuncture can help with a lot of pain conditions. If you're 50 minutes from the nearest doctor though, you might also be a long way from the nearest acupuncturist. Telemedicine appointments are possible, and I could give you some information about that if you are interested. They would be able to give you advice about acupressure self-massage.
I wonder if you could wear a supportive collar that would make travel more comfortable
@Callumin @1964dodge and @Joerider101 might be good folks to talk to about chronic pain
Odd things we do to try an cope with pain or at least I do -
One thing I found helpful is I like to float. It's summer where I live now, so I have an 8' pop up pool - water is cold and I dump in epsom salt brine and float. I miss that silly kiddie pool all winter long. My bath isn't really big enough to float.
It may be mental - but I also think the cold water helps inflammation.
I hope you are feeling less then a five on the scale today. Blessings
One thing I found helpful is I like to float. It's summer where I live now, so I have an 8' pop up pool - water is cold and I dump in epsom salt brine and float. I miss that silly kiddie pool all winter long. My bath isn't really big enough to float.
It may be mental - but I also think the cold water helps inflammation.
I hope you are feeling less then a five on the scale today. Blessings
hi
Hi, I can relate to all the things you said about feeling wor
Hi, I can relate to letting illness feel like your worthless and useless and what is the point in carrying on. I ask myself this every day. I suffer from Trigeminal Neuralgia where I have constant pain every time my eye moves and it gets worse and worse so I can’t work or do anything im also in my 30s. I also have no family that will even listen to me they just stick the phone down on me even if I say the words to them you don’t understand. Effectively I have no family or friends and im sitting here thinking what is the point as it’s not cureable. It defo is not on the scale your having to deal with but I get why you would feel the way u do especially coz before my illness I had a great job and was exercising at the gym regularly.
Hi, I can relate to all the things you said about feeling wor
Hi, I can relate to letting illness feel like your worthless and useless and what is the point in carrying on. I ask myself this every day. I suffer from Trigeminal Neuralgia where I have constant pain every time my eye moves and it gets worse and worse so I can’t work or do anything im also in my 30s. I also have no family that will even listen to me they just stick the phone down on me even if I say the words to them you don’t understand. Effectively I have no family or friends and im sitting here thinking what is the point as it’s not cureable. It defo is not on the scale your having to deal with but I get why you would feel the way u do especially coz before my illness I had a great job and was exercising at the gym regularly.