After my back surgery, within 6 months I had neck surgery, within 6 weeks of that the ch I've had off and on for about 24 years started in worse than I remember. Verapamil for first time was a miracle, but I couldn't miss not one dose. Couple weeks later, my hands went numb off and on, crawling in my calves, feet burn and numb toes. EMG says neuropathy. Drs. say it's not from the neck surgery that it's from the Graves Disease I've had since 2001. They sent me back to work after 49 weeks to drive a forktruck backwards most of the day at full speed, bouncing, jarring, twisted around backwards. Plant hospital had to put me back out. Now I have electric shock feelings in lower back, extreme pain in neck, cramps in calves and abdomen, every inch of my body hurts below the neck and face pain from ch. Tues. I will find out new MRI results. Really afraid that my ch is trigeminal neuralgia and MS, or fibromyalgia, or compressed nerves. Spondylosis was on my chart and stenosis, neuropathy, Grave's disease and ch, but they don't know why I'm in such pain. So I'm on Verapamil, Lyrica, Levoxyl, just got done with Prednisolone. They want me to now start Mobix, Skelaxel, and Tramadol since steroid is done. Too much, I think. But the scary thing is waiting, not knowing what is wrong with you and will they find out so it can be treated correctly. The sad thing, is family that doesn't want you to talk about it. Just pretend there's nothing wrong with you cause they don't want to hear about it. If I had an exact diagnosis and treatment plan I wouldn't have the need to talk about it, but when you're not sure yet what's going on, it is on your mind. My sister only wants to hear "HAPPY THOUGHTS" which is a slap in the face to someone in chronic pain. She expects me to pretend nothings wrong. Which I do and they say, "You don't look sick other than weight loss from 117 to 110 pounds. She expects a Peter Pan world and I said, You're living in Neverland and it's never going to happen of nobody never getting sick. She said she hoped she would just die, not get sick and die, just die. She's not the only one in the family. Nobody wants to help or even believe. My husband has been through the surgerys with me and I have his support, but I feel abandoned by everyone else. I worked 2 weeks before they put me out and people at work don't even hardly care if you live or die. Well, tuesday back to the dr. and hopefully they can fix me. Sorry so long, but tired of pretending.

Unfortunately this goes along with one of my biggest complaints with people today, to damn much Apathy and not enough understanding!

My thoughts and prayers are with you Diamond.  Hang in there you'll find out soon what the Docs say and hopefully what ever is going on is treatable without making you worse in other ways!

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You are not alone, can’t tell you how many time people in my family say “oh you are still having those headaches, I thought they were gone?” my reply is always the same, if they stopped I would tell you and through a friggen party! It is very tough to take from the people that are supposed to love you and care the most about your health and happiness. I am so sorry you are going through this it really sounds like you have way too much to deal with and the lack of support is just a kick in the teeth. My prayers are with you, I hope you get some good news and they can start a proper treatment for you and get your pain under control soon.

Sometimes I think they don't want to believe it because they don't want to take time out of their lives to help you. So if they don't believe you're sick, they wouldn't have to feel guilty.  Thanks for the needed prayers.

I think it is just that they do not want to think of a loved one in pain, at least I hope that is what it is, kind of the out of sight out of mind thing they just don not realize that ignoring our pain causes more pain. We do what we have to to cope and I guess so does our families and loved ones.

Unfortunately Diamond is correct and so are you Matt.

I have run into co-workers with snide comments like "why does she join us?" someone else in the group answers snidely "Too much going on in her head." and they all laugh.  I also have family members who just don't want to talk to me about it or hear about it at all and they get pissy when I get a CH hit in their presence.

I only wish they all had a clue as to just how much these types of reactions can hurt us emotionally.  Never-mind the CH pain we already deal with.   ::)

On Matts side of the coin I also have relatives that HATE to see me that way and really don't know what to do with themselves when they do.  I have tried talking to this one, but she really doesn't want to hear about it either, even though on occasion she does ask, but then quickly changes the subject. 

Dealing with this Devil is a royal pain in the arse for everyone involved!

We just make THEM uncomfortable and they don't like that. We're inconsiderate that way.. ya know we hurt and get around THEM and they just don't like it.. :)

There are a few lucky ones out here who have some great supporters. But the rest of us just have to learn to live with the fact that "we're it!" I quit letting others upset me with their "ignorance" years ago and just secretly wish an antbed on their chest in the middle of the desert on a hot day when they pop out with crap about my CH.  ;)

Ya just can't cure STUPID - so why try.. :-*

Quote:

secretly wish an antbed on their chest in the middle of the desert on a hot day

Reminds me of an old episode of The Tonight Show - Johnny Carson playing Karnack the Invincible. Hurls a quip toward Ed McMahon: "May the lice of ten thousand camels infest your armpits."