CP insomnia

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8 years 5 months ago #10956 by di
Replied by di on topic CP insomnia
(((Fee)))♥,

Hun I feel so much from all your posts of late. You're at your wits end and I can feel that it's frustrating the living daylights out of you. :(
I just want to reach in and give you a gentle, reassuring hug. Keep fighting the good fight Fee, you're strong and have a good support base around you. Lean on us and anyone else close by... We'll all keep fighting these pain demons together. :angry:

Thought this may help with your discomfort in the recliner.
My hubby bought me one of these from Clarke Rubber and it's been amazing and made a HUGE difference to my comfort in my recliner.

For sitting in your recliner try a wedge cushions with coccyx cut out;


Hug for you lovely lady xo
Di ♥

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8 years 5 months ago #11023 by kebsa
Replied by kebsa on topic CP insomnia
grappers has described the whole chronic pain, insomnia thing up really well. the 2 are very closely linked and saly eached feeds the other- we cannot deal with the pain as well as we otherwhise might if we are sleep deprived and vice versa- his analogy of a big hole is one i remember well! But again this is why i think having a really supportive GP And other pain team members to assess and treat you for as long as you have chronic pain, not just a once of assessment- CP what ever the cause is really complex and (putting on my nurse hat here) i can tell you that the average nurse and medical practioner has very little specific education on pain, let alone chrnoic pain! in most medical training pain is just under the list of symptoms which makes it seem so simple! I see a neurologist thanks to having MS but even he will defer to the pain unit for chronic pain managment stuff! find yourself a good GP as soon as you can but just remember that that alone can take a while as there is trust to be earnt on both sides - the average CP sufferer has been badly managed by medical staff but then the average decnet GP has also been targeted and abused by less than honest patients -makes it tough the genuine ones on both sides!


as for the morroring thing i have heard of it and seen it, it works well for some whose limbs are hyper sensitive and very well for upper limb from what i have seen. I am 17 yrs post amputation now and phantom pain is not usually a daily issue, i take tegretol and that currently manages it well most of the time, occasionally i have a bad few hours and then an extra dose of meds will help a few hours later but for the initial few hours simply slapping the stump can help (counter irritation) My phantom pain is usually triggered these days by knocking a nerve growth called a neuroma accidently! but the pain that was keeping me up last night was more the low back stuff. I started with chronic leg pain after an acciednt and had it amputated many yrs later after many surgeries but by then the chronic pain syndrome, CNS windup etc all were an issue, my remaining leg had taken a beating from yrs of hopping on crutches etc- finally got that under control with the help of the pain unit and my intrathecal pump back in 2000 and a knee replacement in the other leg- i actually got back to almost full time work but in a wheelchair!

then i started having odd symptoms that eventually were diagnosed as MS and graduated to electric wheelchair, started having problems with what they call MS Hug which is a rather unpleasant painful symtom. i was also having chronic back pain. thought to be due to the years of poor gait, heavy lifting as a nurse not to mention a scoliosis so my back was not in good shape- then one night i was very tired but could not sleep, i had not s;ept for a couple of nights and finally felt exhausted so i was going to try to at least lie down for a while - i was in my manual chair just getting ready to settled down and went to the bathroom that one last tme but i was so exhausted i passed out and slumped forward on my manual wheelchair. as an amputee i have a stump support in from of my seat on the cair so when i slumped forward it acted like a see saw and tipped me out landing hard on my butt on the tiled bathroom floor where i was stuck all night - thats when i found that while the pain pump had helped my pain, it had caused osteoporosis by altering various hormone levels- i crushed 3 lumbar vertabrae! Thats where the bulk of my back pain comes from now but the MS over time made it harder for me to get on an off an ordinary bed until i got to the point i could not get off in the morning- thats when i started sleeping in the recliner whicha\ thankfully was custom made and funded by disability SA but the fact is that we are not meant to spend t24 hours a day seated and as an amputee we are meant to lie face down for at least one hour every day to prevent hip contractures! i have not been able to do that and basically now have started getting very contracted in the lower back and hips- thats where the issue of liying down comes, its made worse because of the spinal stenosis caused after the fall but i am glad i finally have the bed so that i can hopefully get used to lying back at least a bit more but in the meatime if i push a bit too much and put the back rest down a little too much then it stirs things up for a few days, same when the nurse comes to change my Supra pubic catheter (joys of MS made worse by spinal stenosis!) and i have to lie back for a little bit! at least i can hopefully prevent the contractures getting worse though (lying face down i think is impossible though= last time i had to do that for a procedure it took iv ketamine!

So these days i can be hard to say wherer the issues from one problem start and the other finishes - another reason why i think having a multidisciplinary team managing my care is essential. thesedays the risk of osteopoorosis with long term spinal opiates is a known issue but not when i had my pump first- so sometimes the treatment can contribute accdently -even so i would change my view about the pump- it gt back to work almost full time, something i had not believed possible -sadly the MS also complicated things too but now i have bad periods and i know that the painunit and my gp etc will help as they can. Sleep is still an issue but asi said before, i can cope with one night per week when i just do not sleep - i will use the forums, or sketch/draw or even just try to relax- if i can't sleep the 2nd night thats when i revert to meds but that is not so often these days thankfully

having not slept well last night i think tonight should be better so i hope you guys are lucky too- if not one piece of advice is to distract yourself rather than lie in bed getting more frustrated, that amkes thinks worse! if youread though, get out of bed and only go back when you feel that next wave of sleepiness, something else that sleep doctor mentioned! i have also accumulated a good supply of DVD's but avoid the high adrenaline stuff at 2am. my sleep patterns are still poor but i figure that using an electric wheelchair i just do not use enough physical energy and that is something i cannot change

have a god night guys

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8 years 5 months ago #11045 by BIY
Replied by BIY on topic CP insomnia
Hope you have a better night tonight Kebsa.

I tried that whole sleep hygiene thing with the sleep specialist and found that I significantly increased my neck and shoulder pain by getting up and sitting up in the night when I was awake. I have neuropathic pain in my neck and even the soft recliner cushion feels like a steel bar against it. It's very sore already by the end of the day from the amount of sitting, so when I tried doing it in the night over about a 2 month period, the neck and shoulders were significantly worse then triggered stronger headaches and more frequent migraines....and it didn't make one jot of difference to my poor sleep!

The one thing I've kept from the sleep hygiene is going to bed around the same time each night and never too early.

It cracks me up when I see articles on restless leg syndrome or CP and it says "it's important to get plenty of sleep"...and I'm thinking "duh, I would if I could!" :o

I found that fascinating re slapping your stump Kebsa. Would that work also if you slapped another part of your body that wasn't hurting to take the mind away from the part that is hurting? Couldn't imagine slapping my jaw (ouch!) but wondered if I, say, slapped my arm, while my jaw was hurting, would that confuse the brain messages and be helpful? Sounds a bit of a grim prospect, but I find this whole 'plastic brain' thing fascinating.

Hopefully sweet dreams for you tonight Kebsa.

Fee xo

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8 years 5 months ago #11046 by BIY
Replied by BIY on topic CP insomnia
Thanks sweet Di :)

What I really need is one of these with the neck bit cut out cos it's the neuropathic pain in it leaning against the back of the recliner that causes the pain.

Thank you for the thought; I really appreciate it.

Fee xo
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8 years 5 months ago #11048 by di
Replied by di on topic CP insomnia
Try the $2 shops Fee. I got the U shaped mini pillow for $9.99 and it's great. xo

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8 years 5 months ago #11054 by BIY
Replied by BIY on topic CP insomnia
OMG....going to be an interesting night tonight with men and big machinery laying bitumen right outside our house....and yelling out to each other at the top of their voices....hmmmm....

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