Pain is exhausting

[firecat88]

It has been almost exactly half a year since my last surgery. In this surgery, they discovered that my old shunt (which probably should have been taken out years ago when it was replaced, but the doctors left it in) was causing problems in the form of a cyst. A good portion of my old shunt was removed. They couldn’t remove all of it for various reasons that I won’t go into because ‘eww’.

A week ago, I woke up with quite a severe stinging/burning sensation around my shunt tubing. It’s the second time it’s happened since the surgery, and I *was* doing a fairly strenuous workout the day before, so I didn’t think anything of it. I figured I’d just pulled something wrong and it would go away.

Well, here we are almost 7 days later and it’s still hurting. I turn my head a certain way, it hurts. I move my arms a certain way, it hurts (doubly unfortunate because I’m right handed and it’s on my right side). I lean over my plate when I’m eating, it feels like the skin is being ripped apart. I touch it, it burns like hell.



I am so effing sick of being in pain.

[Mytical]

*hugs* Yes, pain is quite exhausting. People who don't deal with chronic pain, and this is not meant as an offense to anybody, do not have a clue. Sometimes it is hard to soldier on when there is no relief in sight. Keep on keeping on.

[firecat88]

*hugs* Thanks. Yeah, I am trying to stay as positive and optimistic as my old neurosurgeon observed I was before my last surgery. @_@ As I'm entering into day 7 of this shit, though, where nothing seems to make it better except the Vicodin (which I really hate taking because it does weird things to my stomach and makes me have very vivid and strange dreams) I have left over from said last surgery, it's kinda hard.

[Gizmo]

*hugs*.

I do know the exhaustion constant pain brings and yeah, it sucks.

However I also know how easy it is to live with something because you are used to being in pain and then realise there was something treatable wrong with you. If you feel it passing over that barrier please seek a checkup to make sure. xx

[firecat88]

Yeah, it is definitely 'seeing a specialist' time at this point. My mom said that she felt some swelling around where the pain is, which means that there for sure is something building up there. I'm in the process of trying to get all my records transferred over from my old neurosurgeon to the new one.

I'm in considerably less pain today than I have been all week, though, which means the Vicodin did help (the dream that resulted from taking it, though? Yikes. @_@). I mean, it still burns when I touch it and I can feel pulling on the tubing when I move my head a certain way, but it's not at the level of 'Do not want to do anything but lay here and cry' for now. So there is that.

[Food Lady]

*hugs* Yes, pain is quite exhausting. People who don't deal with chronic pain, and this is not meant as an offense to anybody, do not have a clue. Sometimes it is hard to soldier on when there is no relief in sight. Keep on keeping on.

This. Also, I recently learned pain is such a real force that it can not only raise blood pressure, but blood sugar as well. No one should ever say "It's all in your head." Well, unless it's a headache, of course.

[mathnerd]

Gentle internet hugs. Two of my boys have a painful bone disease, so I can empathize to the greatest extent that somebody without chronic pain can. Feel free to PM any time if you need to vent.

[Gizmo]

I mean, it still burns when I touch it and I can feel pulling on the tubing when I move my head a certain way, but it's not at the level of 'Do not want to do anything but lay here and cry' for now. So there is that.

Good. And yeah, been there the last week myself. Stupidly got burnt over the weekend and its not the burn thats the issue at skin level its the muscles under the burn that are causing the "don't want to move, go away or I'll cry at you" phases.

[Seshat]

Another severe chronic pain patient here. You have my complete sympathy and understanding. (As in, unlike the people for whom I can offer only sympathy, you get understanding too.)
BTW: here's an internet shoulder. It needs regular irrigation, so if you have any spare tears.....


Do you want a summary of pain management strategies? If you already have the info I don't want to be a boring know-it-all. (Also, if firecat wants it, and someone else who knows this stuff gets to the thread first, please by all means provide it!)

Do lean on local friends for practical support until you get whatever's wrong fixed, please.

[Mytical]

Also be careful of the downward spiral that can come with invisible illnesses. You hurt, so you can do less.. people say things like "Suck it up" or don't believe the illness exists (It's all in your mind don't cha know).. which causes stress. Also stressing about not being able to do what you THINK you should be doing. Depression and stress are hard on the body as well as the mind. Which makes the pain worse.. and the cycle goes around again. *hugs* A few of us on this forum have been there... so like Seshat said .. if you need to talk to people who understand.. you know how to get ahold of us.

[firecat88]

*hugs everyone* Thank you all so much for your support. It's very comforting to know that I have people here to talk to who have had similar experiences or have family members who have. I don't really have that IRL (of all my friends and family, I'm kinda the only one with this degree of illness/disability. And there were no groups to be found on Meetup. *checked*), and the one spina-bifida-and-hydrocephalus group I found on FB turned into such a hugely toxic drama farm that I ran screaming from it and never looked back.

Pain is minimal today, but I think that's the Vicodin from the other day still running through my system a bit (I had another weird-and-unpleasant dream last night, hence why that's my theory. T_T) Still waiting to hear if the relevant medical records were transferred but, once I know it's happened, I'll be making an appointment.

[firecat88]

After a pretty decent stretch of not having any pain, it is back. @_@ More than that, it is swollen again where my shunt comes down across my chest. I think the 'being in a car for most of the past 48 hours' has had a not-so-great effect on me.

Neurosurgeon appointment still hasn't happened yet. They have my records, but I need a referral from a doctor I don't have yet because there hasn't been time to look for one. @_@

[AccountingDrone]

Hurry up and make time!

We are adding another person in pain around here, our roomie fell in the barn night before last [um, Friday] and broke her left ankle. She just had a plate put into it today and will probably be home tomorrow. Not looking foreward to it because my right foot is in full on flare, so neither of us will be able to walk around and get lunch - Rob will have to make ups up sandwiches and snacks and put them in a cooler for us to scrounge. Bathroom visits are going to be interesting. *sigh*

[firecat88]

@_@ The bump is back and is rather red and ouchy, thanks probably to the combination of me having been on my period and having caught a pretty nasty cold last weekend. However, time has been made and, in fact, I had my first ever appointment with my new primary care doctor yesterday. She's really nice and I felt rather horrible for freaking her out.

I showed her both the bump and the still-not-fully-healed-yet incision from my breast biopsy/shunt revision. Not sure what to make of it, she called in another doctor in the clinic to come look at them. Neither of them knew what to make of it, but they didn't wanted to poke too much at it either. So I am now on antibiotics for 10 days to see if that clears things up. Also, I have a feeling that the referral will happen very fast now that I've had two doctors look at this thing and go 'What the hell?'