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Oh how I yearn for sleep
Jan 19, 2008 10:44PM
- 5 comments
Hello all...it has been a rough few weeks as my body has decided to rebel against sleep, something that should be so natural and effortless. I am not one to whine or call the doctor for something every week but I finally had to call her this week. I was exhausted, mentally and physically. I hurt, especially my joints. Yes, I am used to everyday pain, in fact, I am on chronic pain meds specifically Fentanyl and Percocet for breakthrough pain. I usually am fine with just the Fentanyl and don't usually require the Percocet, but not lately. I had to break down and take some as I was just in so much pain, throbbing and sensitive to touch. I had to turn so much in bed that I felt like I was strapped to a rotisserie spit and being rotated. I am dead serious...
I called my doctor on Wed. and described what was happening to me to her nurse who then relays it to my doctor to assess. I talked about the joint pain preventing me from getting any half way decent sleep, having to turn frequently. There were nights when I got only about a hour of sleep total. Pathetic I know...That kind of sleep deficit usually makes me into a cranky soul and why shouldn't I be? If I am snapping at the littlest of things, then you know I am not feeling wonderful. Even the best dispositions have a bad day, which some people don't seem to understand. I am usually in a pretty good mood despite all that has happened to me, but pain does eat away at you...chips at your emotions, your soul. I know that others suffer significantly more pain than I do on a daily basis, but this is out of my norm and it is something I have to either adjust to or get relief from. I choose the latter. I want relief, yesterday.
My doctor ordered labs to see what could be causing my problems...the full rheumatological panel including RA, Lupus, scleroderma, ANA, Sed rate etc....Meanwhile I am on the same dose of pain meds. I will need to get creative, but I have no problem hunting my doc down for more options if the pain gets worse. I wish that she prescribed some sleeping meds...that certainly is on my mind. If after this weekend I don't get more than a few hours of sleep each night, I am going to try to get a script for that as well. I even ordered a new mattress in hopes that will offer more comfort for me. My current mattress is an older mattress on a hospital bed. I have a memory foam topper on it to help, but these days, it isn't. My new mattress is a very nice 12" memory foam type mattress that is suppose to mold to my physique, taking pressure off of my joints. Sounds good in theory but will it work? My brother swears by his as well as my good friend with arthritis so I am giving it a shot as well. It sure can't hurt....anything is better than what I am sleeping on now, even a stack of broken down cardboard boxes!!
So I wait for now, nursing my joints taking Ibuprofen and Percocet for breakthrough pain along with Benedryl to help induce some sleepiness. So far, benedryl has succeeded only in relieving my sinus pressure some, so I guess there has been some benefit to taking that med. I should get some of my bloodwork results back sometime next week. My doc is holding out on prescribing anything until she gets those back...not sure how not changing pain medication will be helpful. Like I said, I am not a sissy and whenever I call the doctor with a complaint, it should be taken seriously. When I say pain, it is usually at least a 6-7 minimal on the pain scale. I am okay until I hit about 5, then I know I better get it under control before it gets ahead of me and makes me miserable.
Right now, I am keeping my fingers crossed and continue to have hope. Sunny
I called my doctor on Wed. and described what was happening to me to her nurse who then relays it to my doctor to assess. I talked about the joint pain preventing me from getting any half way decent sleep, having to turn frequently. There were nights when I got only about a hour of sleep total. Pathetic I know...That kind of sleep deficit usually makes me into a cranky soul and why shouldn't I be? If I am snapping at the littlest of things, then you know I am not feeling wonderful. Even the best dispositions have a bad day, which some people don't seem to understand. I am usually in a pretty good mood despite all that has happened to me, but pain does eat away at you...chips at your emotions, your soul. I know that others suffer significantly more pain than I do on a daily basis, but this is out of my norm and it is something I have to either adjust to or get relief from. I choose the latter. I want relief, yesterday.
My doctor ordered labs to see what could be causing my problems...the full rheumatological panel including RA, Lupus, scleroderma, ANA, Sed rate etc....Meanwhile I am on the same dose of pain meds. I will need to get creative, but I have no problem hunting my doc down for more options if the pain gets worse. I wish that she prescribed some sleeping meds...that certainly is on my mind. If after this weekend I don't get more than a few hours of sleep each night, I am going to try to get a script for that as well. I even ordered a new mattress in hopes that will offer more comfort for me. My current mattress is an older mattress on a hospital bed. I have a memory foam topper on it to help, but these days, it isn't. My new mattress is a very nice 12" memory foam type mattress that is suppose to mold to my physique, taking pressure off of my joints. Sounds good in theory but will it work? My brother swears by his as well as my good friend with arthritis so I am giving it a shot as well. It sure can't hurt....anything is better than what I am sleeping on now, even a stack of broken down cardboard boxes!!
So I wait for now, nursing my joints taking Ibuprofen and Percocet for breakthrough pain along with Benedryl to help induce some sleepiness. So far, benedryl has succeeded only in relieving my sinus pressure some, so I guess there has been some benefit to taking that med. I should get some of my bloodwork results back sometime next week. My doc is holding out on prescribing anything until she gets those back...not sure how not changing pain medication will be helpful. Like I said, I am not a sissy and whenever I call the doctor with a complaint, it should be taken seriously. When I say pain, it is usually at least a 6-7 minimal on the pain scale. I am okay until I hit about 5, then I know I better get it under control before it gets ahead of me and makes me miserable.
Right now, I am keeping my fingers crossed and continue to have hope. Sunny
Sheesh, Sunny, what next? Would this have anything to do with your new disease, Ehlers-Danloff (whatever the sp..)? I really know nothing about that one. Of course you're not a whiner! I BELIEVE YOUR PAIN, because I don't think you would ever exaggerate after all the other stuff you have been through. It is a horrible thing to not being able to sleep. I have severe RLS, and while it is not painful, I have been awake all night before tossing and turning. Your description about being on a skewer is apt. I told the sleep guy at my appt. that he could dc any drug he wanted except my Mirapex for the RLS. lol And I mean it. What else could you take besides the Benadryl? Do you have a set rate on your vent? Surely they could order some sleeping pill, the new Lunestra maybe? Hoping that the new mattress will help at lot....
How was the new neuro if you found one yet? I hate to break in new doctors, don't you? You have to tread the fine line between telling them what to do while letting them know that you are going to be your best advocate and that you DO know a lot and it is your body after all. At the same time you have to try to be open to new ideas and thoughts. Ugh.
Nothing much new for me here. I still have not heard back about the sleep study which was 2 weeks ago tomorrow. I did call them, but it wasn't ready, supposedly. My new concentrator did finally arrive and that is exciting. I know I need the bipap so please pray I get it before I go to Florida for Feb.!
They repeated some labs, like a CK and a sed rate, and my CK continues to be normal and my sed rate is still up at 51. No one knows why yet, and I have had, I think, all the labs for the stuff you mention above, like RA and Lupus and all and they are negative. Ideas?
Well, good luck with the sleeping and please have some hope and I will keep my fingers crossed as well.
Margaret
How was the new neuro if you found one yet? I hate to break in new doctors, don't you? You have to tread the fine line between telling them what to do while letting them know that you are going to be your best advocate and that you DO know a lot and it is your body after all. At the same time you have to try to be open to new ideas and thoughts. Ugh.
Nothing much new for me here. I still have not heard back about the sleep study which was 2 weeks ago tomorrow. I did call them, but it wasn't ready, supposedly. My new concentrator did finally arrive and that is exciting. I know I need the bipap so please pray I get it before I go to Florida for Feb.!
They repeated some labs, like a CK and a sed rate, and my CK continues to be normal and my sed rate is still up at 51. No one knows why yet, and I have had, I think, all the labs for the stuff you mention above, like RA and Lupus and all and they are negative. Ideas?
Well, good luck with the sleeping and please have some hope and I will keep my fingers crossed as well.
Margaret
Oh sunny i feel your pain and know exactly what you mean i am kind of experiencing the same thing. Only my pain is breathing troubles which leads to panic attacks and its making me kind of emotional. Thats why i wanted you to respond to my post you seem to have alot of info about asthma. I just started my inhaler(albuterol) again and prilosec. Again sunny i hope you feel beeter soon. leslie240
Okay..I just typed a wonderful, long response and poof!! Off it went into cyberspace. GAhhh!!! That drives me nuts when this happens. Thank you both for your responses, they really meant alot to me.
Margaret, I hope that you get that BiPAP soon. You should feel alot better during the day once you start using it. I know I did at least for awhile. Remember to ask for humidification...it will dry you out otherwise. It is cool that you got your new concentrator too. As far as that sed rate, not sure what that would mean in your case. I know it measures inflammation, any inflammatory process can elevate the sed rate. You are an odd one :)
I was hoping that the doc would order something to knock me out to lala land, I am on a vent with a protected airway on assist pretty much all of the time so respiratory depression should not even be an issue. Next time I talk to her, I am asking for something to knock me into lala land. Hopefully I will hear about my test results sometime this week. They usually take about a week or so to come back, maybe early next week at the latest. They will probably be normal,the only thing that might be elevated would be my sed rate. It is usually normal, but sometimes it is abnormal. See, aren't we alike in a way LOL!
On a good note, I finally got my new matress. Yeah!! It is really nice and thick...really cool. It came vacuum packed, about a third of its full size. Once the wrapper was removed, it started to poof up right away. I am definitely a convert of memory foam mattresses. It is firm but not too firm and it conforms to my body. I think it will help with my poor joints. As for my pain being from Ehlers Danlos, it probably has a huge part in it. I have had chronic pain issues for quite some time now, I am on Fentanyl and percs to control it. Now i know why my joints are so tender along with my muscles.
I hope that you get your results soon from your sleep lab...fingers crossed for you too!
Leslie, I will most certainly look at your post....I am sorry that you are having so much trouble with anxiety too. Unfortunately, whenever anyone has problems breathing, anxiety is a normal feeling. I don't know why docs don't seem to understand that the two can go hand in hand. If the asthma is controlled, then there is less anxiety. I know that whenever I had an asthma attack, my anxiety issues went through the roof. I ope that you get some relief soon...Hugs to both of you, Sunny :)
Margaret, I hope that you get that BiPAP soon. You should feel alot better during the day once you start using it. I know I did at least for awhile. Remember to ask for humidification...it will dry you out otherwise. It is cool that you got your new concentrator too. As far as that sed rate, not sure what that would mean in your case. I know it measures inflammation, any inflammatory process can elevate the sed rate. You are an odd one :)
I was hoping that the doc would order something to knock me out to lala land, I am on a vent with a protected airway on assist pretty much all of the time so respiratory depression should not even be an issue. Next time I talk to her, I am asking for something to knock me into lala land. Hopefully I will hear about my test results sometime this week. They usually take about a week or so to come back, maybe early next week at the latest. They will probably be normal,the only thing that might be elevated would be my sed rate. It is usually normal, but sometimes it is abnormal. See, aren't we alike in a way LOL!
On a good note, I finally got my new matress. Yeah!! It is really nice and thick...really cool. It came vacuum packed, about a third of its full size. Once the wrapper was removed, it started to poof up right away. I am definitely a convert of memory foam mattresses. It is firm but not too firm and it conforms to my body. I think it will help with my poor joints. As for my pain being from Ehlers Danlos, it probably has a huge part in it. I have had chronic pain issues for quite some time now, I am on Fentanyl and percs to control it. Now i know why my joints are so tender along with my muscles.
I hope that you get your results soon from your sleep lab...fingers crossed for you too!
Leslie, I will most certainly look at your post....I am sorry that you are having so much trouble with anxiety too. Unfortunately, whenever anyone has problems breathing, anxiety is a normal feeling. I don't know why docs don't seem to understand that the two can go hand in hand. If the asthma is controlled, then there is less anxiety. I know that whenever I had an asthma attack, my anxiety issues went through the roof. I ope that you get some relief soon...Hugs to both of you, Sunny :)
I'm glad that we heard from you but its very unfortunate it hate to be under these circumstances.
Hope everything gets better really soon.
Enjoy that new mattress and some sleep hopefully.
Prayers
Jessi
Hope everything gets better really soon.
Enjoy that new mattress and some sleep hopefully.
Prayers
Jessi
Hey Sunny, how are you? Are you sleeping and is the pain any better? I worry when you don't answer my emails! I got over the bronchitis but now have moon face from 3 weeks of large amounts of Prednisone. Ugh. I did finally yesterday get the sleep guy to turn my expiratory pressure down to 5. The jury is still out as to whether I feel less tired.
Hope things are a little better for you. Praying for you!
Margaret
Hope things are a little better for you. Praying for you!
Margaret
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