Aa
Having a rough time right now
Here it is 3AM and not able to sleep. I am sleepy, but too much pain! But before I get into that some (what could be ) good news.
Last week, or was it the week before, I had my appointment with my eye doctor. This was my first appointment with her since my official DX of MS and diabetes.
The pressure in my eyes was way down, the lowest she has ever seen. But since I have not been thinking too great I didn't think to ask how low it was. She also spent what seemed like forever looking inside of my eyes from every angle. I half expected her to climb on top of me at times while she was doing this to get a better look. :) At the end she said "There is no damage from the MS or Diabetes". In the past she had noted a slight swelling of the optic nerve in my left eye which she blamed on the high eye pressure. So again not thinking I didn't ask if that meant the swelling has gone away, or just not worse. I'll have to get a copy of her notes the next time I go up to the VA and see what it says as I won't see her again for a year.
I wish there was more good news, but alas that is not the case.
For about 2 months now I have not been sleeping good at all. I think the longest I have slept at one time is about 4 hours when I normally need at least 10 hours to be able to function the next day. Mostly this is due to the pain in my right big toe. It feels like someone has taken a razor and sliced it open along the whole length of the outside. The pain isn't constant, but always seems to flare up when I lay down in my bed no matter what time that is ( day or night). I think the only sleep I am getting is when the exhaustion gets to the point I basically just pass out.
So far I have only been able to come up with three things that could be causing the pain.
1) Nerve pain from my MS. I include this one because it doesn't matter if anything is touching my toe or not for the pain to get really bad. It also gets really bad if I straighten out my leg. I have tried to increase my Gabapentin dosage before trying to go to sleep. The only result has been that when I do end up sleeping I will end up wetting my bed because I don't wake up when I have to go.
2) Something to do with my shoe / foot brace on my right foot. I kind of discount this one for the most part because while the toe will sometimes hurt while I am wearing the shoe and brace, most of the time it doesn't. I have also tried going without the brace for several days without any change with the big toe pain. I also have taken my narcotic pain medication which doesn't help with the pain at all.
3) Some new ailment for me like a bunion or something. But again I would think that with something like that any time I put on a shoe it would hurt which isn't the case. I also think my pain medications would also help keep the pain at bay in this case.
Well it is almost 4AM now and the toe isn't hurting currently. Maybe I can sneak in some sleep before it flares up again.
Dennis
Last week, or was it the week before, I had my appointment with my eye doctor. This was my first appointment with her since my official DX of MS and diabetes.
The pressure in my eyes was way down, the lowest she has ever seen. But since I have not been thinking too great I didn't think to ask how low it was. She also spent what seemed like forever looking inside of my eyes from every angle. I half expected her to climb on top of me at times while she was doing this to get a better look. :) At the end she said "There is no damage from the MS or Diabetes". In the past she had noted a slight swelling of the optic nerve in my left eye which she blamed on the high eye pressure. So again not thinking I didn't ask if that meant the swelling has gone away, or just not worse. I'll have to get a copy of her notes the next time I go up to the VA and see what it says as I won't see her again for a year.
I wish there was more good news, but alas that is not the case.
For about 2 months now I have not been sleeping good at all. I think the longest I have slept at one time is about 4 hours when I normally need at least 10 hours to be able to function the next day. Mostly this is due to the pain in my right big toe. It feels like someone has taken a razor and sliced it open along the whole length of the outside. The pain isn't constant, but always seems to flare up when I lay down in my bed no matter what time that is ( day or night). I think the only sleep I am getting is when the exhaustion gets to the point I basically just pass out.
So far I have only been able to come up with three things that could be causing the pain.
1) Nerve pain from my MS. I include this one because it doesn't matter if anything is touching my toe or not for the pain to get really bad. It also gets really bad if I straighten out my leg. I have tried to increase my Gabapentin dosage before trying to go to sleep. The only result has been that when I do end up sleeping I will end up wetting my bed because I don't wake up when I have to go.
2) Something to do with my shoe / foot brace on my right foot. I kind of discount this one for the most part because while the toe will sometimes hurt while I am wearing the shoe and brace, most of the time it doesn't. I have also tried going without the brace for several days without any change with the big toe pain. I also have taken my narcotic pain medication which doesn't help with the pain at all.
3) Some new ailment for me like a bunion or something. But again I would think that with something like that any time I put on a shoe it would hurt which isn't the case. I also think my pain medications would also help keep the pain at bay in this case.
Well it is almost 4AM now and the toe isn't hurting currently. Maybe I can sneak in some sleep before it flares up again.
Dennis
An update on this.
It looks like it was probably nerve pain after all. The pain went away on its own yesterday evening and I have not had any pain all through the night or today. Oh was it nice to be able to sleep again! :)
Lulu,
Yes I have a high pain threshold. I have had root canals and tooth extractions done without any anesthetic. In fact within 4 hours of my CABG I was driving the nurses crazy because I didn't want any more pain medication. Even when I had my hand broken in an auto accident it didn't really hurt but just didn't feel right so I headed for the doctors. So when I complain of pain you can imagine just how bad the pain is.
Dennis
It looks like it was probably nerve pain after all. The pain went away on its own yesterday evening and I have not had any pain all through the night or today. Oh was it nice to be able to sleep again! :)
Lulu,
Yes I have a high pain threshold. I have had root canals and tooth extractions done without any anesthetic. In fact within 4 hours of my CABG I was driving the nurses crazy because I didn't want any more pain medication. Even when I had my hand broken in an auto accident it didn't really hurt but just didn't feel right so I headed for the doctors. So when I complain of pain you can imagine just how bad the pain is.
Dennis
on your stomach after CABG? Oh my, Dennis, you are one tough cookie!!! That thought just took the air out of me. How did you stand the pain? You don't have to answer that question, but i am dumbfounded. My DH clutched that pillow to his chest for several months after his CABG.
Twopack hit a great point - that diabetes connection needs to be looked at closer.
Twopack hit a great point - that diabetes connection needs to be looked at closer.
First to all thank you for your responses! They have been very much appreciated. I have spent most of the day napping on and off when my toe would cooperate.
After posting early this morning I headed right to bed, but by the time I walked the 50 feet to my bedroom my toe was hurting again. remembering about mentioning that it hurts worse when I straighten out my leg I tried a new experiment. I curled up my leg to my body as far as I could and within a few minutes the pain went away and I was able to fall asleep. Of course while sleeping I did straighten out my leg causing the pain to come back and wake me up. So if I could figure out a way to hog tie that leg up next to my body I could probably get the sleep I need. :)
JJ,
Sorry that you also have sleep problems. My doctors at they VA a very reluctant to give me any more meds because I am already taking so many. It took me almost a year to talk my PC into giving me my narcotic pain medication and then she only allows me 30 pills per year. I take it when I have TN pain. It really doesn't touch the TN pain but knocks me out so that I can sleep through the pain. But either I have become use to that dosage of pain medication or this pain is worse than TN pain as they don't knock me out with this.
Lulu,
A recliner would not work for me. I can't sleep unless I am on my stomach so I recliner would break my back. Even when I was in the hospital after my open heart surgery I had to sleep on my stomach.
Lisa,
I am already on both Gabapentin and an anti-depressant. The Gab is for my tremors and the anti-depressant for anxiety due to PTSD. I tend to be very sensitive to medications and take 200mg of Gab and 12.5mg of the AD. But I am still glad you brought this up because now that I think about it the toe pain started about the same time as they started me on the AD. So now I am wondering if that is the cause! I think I'll stop the AD for a while and see if the toe pain stops.
Mary,
I didn't mention gout because I had no idea of how to spell it. :)
My blood glucose has been under control with diet alone within just a few days of getting that DX. In fact because of this my PC down graded it to prediabetes the last time I saw her since it was brought under control so quick and easily. My A1C had been slowing climbing over the last few years and had just gone hit the 7.0 limit a few months ago.
As you can see by what I wrote earlier in the post having my leg elevated doesn't seem to be the problem, it seems more like the position of my leg ( straight vs bent). This has also got me to wondering if it might be a muscle cramping causing the pain. Maybe with my foot numbness it feeling like a cut more than a cramp. I have also noticed that my right calf has been cramping up a lot lately.
To ALL:
I do have appointments with both my Neuro ( 22) and PC (23) and plan to bring this up with both of them.
Dennis
After posting early this morning I headed right to bed, but by the time I walked the 50 feet to my bedroom my toe was hurting again. remembering about mentioning that it hurts worse when I straighten out my leg I tried a new experiment. I curled up my leg to my body as far as I could and within a few minutes the pain went away and I was able to fall asleep. Of course while sleeping I did straighten out my leg causing the pain to come back and wake me up. So if I could figure out a way to hog tie that leg up next to my body I could probably get the sleep I need. :)
JJ,
Sorry that you also have sleep problems. My doctors at they VA a very reluctant to give me any more meds because I am already taking so many. It took me almost a year to talk my PC into giving me my narcotic pain medication and then she only allows me 30 pills per year. I take it when I have TN pain. It really doesn't touch the TN pain but knocks me out so that I can sleep through the pain. But either I have become use to that dosage of pain medication or this pain is worse than TN pain as they don't knock me out with this.
Lulu,
A recliner would not work for me. I can't sleep unless I am on my stomach so I recliner would break my back. Even when I was in the hospital after my open heart surgery I had to sleep on my stomach.
Lisa,
I am already on both Gabapentin and an anti-depressant. The Gab is for my tremors and the anti-depressant for anxiety due to PTSD. I tend to be very sensitive to medications and take 200mg of Gab and 12.5mg of the AD. But I am still glad you brought this up because now that I think about it the toe pain started about the same time as they started me on the AD. So now I am wondering if that is the cause! I think I'll stop the AD for a while and see if the toe pain stops.
Mary,
I didn't mention gout because I had no idea of how to spell it. :)
My blood glucose has been under control with diet alone within just a few days of getting that DX. In fact because of this my PC down graded it to prediabetes the last time I saw her since it was brought under control so quick and easily. My A1C had been slowing climbing over the last few years and had just gone hit the 7.0 limit a few months ago.
As you can see by what I wrote earlier in the post having my leg elevated doesn't seem to be the problem, it seems more like the position of my leg ( straight vs bent). This has also got me to wondering if it might be a muscle cramping causing the pain. Maybe with my foot numbness it feeling like a cut more than a cramp. I have also noticed that my right calf has been cramping up a lot lately.
To ALL:
I do have appointments with both my Neuro ( 22) and PC (23) and plan to bring this up with both of them.
Dennis
Duh! I see now that you mentioned having diabetes. You probably already know that increases your risk of developing circulatory problems.
Since this problem involves a toe/foot I wouldn't wait to bring it to the doctor's (or podiatrist's) attention.
You probably know this too but I can't help myself from throwing out this CAUTION - DO NOT be tempted into using heat or ice applications, especially on your feet!!
Mary
Since this problem involves a toe/foot I wouldn't wait to bring it to the doctor's (or podiatrist's) attention.
You probably know this too but I can't help myself from throwing out this CAUTION - DO NOT be tempted into using heat or ice applications, especially on your feet!!
Mary
Hi Dennis. Glad to hear that great news on your eyes. It sounds good to me no matter what answers you get to those clarification questions. I would think anytime they don't have you coming for an early return visit is a plus.
Sounds like you have a good personal investigation and elimination trials going on with that big toe pain. You got me to wondering myself. The big toe is THE classic spot for gout but you didn't mention redness and the pain ebbs and flows so I imagine you already know gout isn't likely here.
It really caught my attention when you mentioned the pain starts when you get in bed. Does it then stop when your foot/leg isn't elevated for a while? This could be an indication of an arterial blood flow problem. If you have diabetes or a known circulatory problem it becomes more likely.
Problems in the veins make it difficult to carry blood out of the legs and you get swelling and discoloration. Raising the legs can help.
Problems in the arteries means oxygen rich blood might have a hard time getting into the areas farthest away from the heart (and toes win that contest). Elevating the legs can mean more work for the heart to pump blood to the feet against the help of gravity. Deprived areas can be intensely painful. Also, the skin can blanche out and become shiny.
I hope you'll think about making an appointment with one of the VA doctors to see what they think Dennis. If it hasn't improved in over two months then it is likely a problem they need to know about. Some things can be treated easily at an early stage but become big issues quickly if let go too long.
I don't think this is an emergency situation. I just think you need to know WHAT it is and I'm guessing you need to get the ball rolling a little quicker than usual when you're working with a system that's not known for being Speedy Gonzales.
In the mean time, a night sleeping in a recliner could make for a good test as long as you don't get stretched out too straight in it. If you end up with a better night's sleep I'd enjoy the rest but try to move up your next appointment date.
Good to see you here. Let us know how you do.
Mary
Sounds like you have a good personal investigation and elimination trials going on with that big toe pain. You got me to wondering myself. The big toe is THE classic spot for gout but you didn't mention redness and the pain ebbs and flows so I imagine you already know gout isn't likely here.
It really caught my attention when you mentioned the pain starts when you get in bed. Does it then stop when your foot/leg isn't elevated for a while? This could be an indication of an arterial blood flow problem. If you have diabetes or a known circulatory problem it becomes more likely.
Problems in the veins make it difficult to carry blood out of the legs and you get swelling and discoloration. Raising the legs can help.
Problems in the arteries means oxygen rich blood might have a hard time getting into the areas farthest away from the heart (and toes win that contest). Elevating the legs can mean more work for the heart to pump blood to the feet against the help of gravity. Deprived areas can be intensely painful. Also, the skin can blanche out and become shiny.
I hope you'll think about making an appointment with one of the VA doctors to see what they think Dennis. If it hasn't improved in over two months then it is likely a problem they need to know about. Some things can be treated easily at an early stage but become big issues quickly if let go too long.
I don't think this is an emergency situation. I just think you need to know WHAT it is and I'm guessing you need to get the ball rolling a little quicker than usual when you're working with a system that's not known for being Speedy Gonzales.
In the mean time, a night sleeping in a recliner could make for a good test as long as you don't get stretched out too straight in it. If you end up with a better night's sleep I'd enjoy the rest but try to move up your next appointment date.
Good to see you here. Let us know how you do.
Mary
Hey, Dennis - Sorry you're having all this pain, and not being able to sleep on top of it all. You might consider other meds for what definitely sounds like neuropathic pain. Perhaps Celexa, or Lyrica? Yes, they are antidepressants, but they're also pretty effective with pain management. I know the VA is reluctant to try the more expensive meds, though...Maybe a call to your neuro is in order?
Hugs,
Lisa
Hugs,
Lisa
Dennis, so sorry to hear about this pain - good news about the eyebs, though.
My bunion pain is worse when I go to sleep - weird as that sounds I understand it is normal. Unfortunately, I saw my podiatrist yesterday about surgery to correct it, it is so out of alignment there aren't other options.
Hang in there - I hope you get some sleep. Is it possible to try sleeping in a recliner to see if that postion would be better?
Lulu
My bunion pain is worse when I go to sleep - weird as that sounds I understand it is normal. Unfortunately, I saw my podiatrist yesterday about surgery to correct it, it is so out of alignment there aren't other options.
Hang in there - I hope you get some sleep. Is it possible to try sleeping in a recliner to see if that postion would be better?
Lulu
COMMUNITY LEADER
I'm still here if you need company and can't sleep, its only 9:30pm in my part of world.
Hmmm i was thinking option 1 because i've had the big toe is killing me and there is nothing wrong with the blasted thing, well not that anyone could find. Still i can get to the point of 'possibly' cutting it off and then it goes away again, so i've put it down to my wonky brain.
Sleeping isn't working for me either and hasn't for..... gosh it would be going on a year by now, I just go with the ebb and flow. I figure i can count the hours of 'pretend' sleep to be classed as meditation lol I have more pain issues when i'm awake than whilst trying to sleep (touch wood) my biggest issue going to sleep is the jerks I do and the buzzing driving me nutts. Once i'm asleep though i'm out for the count (ave 5hrs) and i nap for a couple of hours during the day, which I think helps keep me sane.
I'm not sure if this will help at all but my brother has Peripheral Neuropathy and the pain can go off the charts so he's been put on a coctail of meds to takle it. Heavy duty pain meds dont touch it but the gab and ??? (sorry my mind just blanked out of me) and its finally under control. It's probably worth talking to your doc about trying a combination until you find something that works for you. Other than that i'm out of ideas, sorry.
Oh could the diabetes be connected to your toes?
HUGS..........JJ
Hmmm i was thinking option 1 because i've had the big toe is killing me and there is nothing wrong with the blasted thing, well not that anyone could find. Still i can get to the point of 'possibly' cutting it off and then it goes away again, so i've put it down to my wonky brain.
Sleeping isn't working for me either and hasn't for..... gosh it would be going on a year by now, I just go with the ebb and flow. I figure i can count the hours of 'pretend' sleep to be classed as meditation lol I have more pain issues when i'm awake than whilst trying to sleep (touch wood) my biggest issue going to sleep is the jerks I do and the buzzing driving me nutts. Once i'm asleep though i'm out for the count (ave 5hrs) and i nap for a couple of hours during the day, which I think helps keep me sane.
I'm not sure if this will help at all but my brother has Peripheral Neuropathy and the pain can go off the charts so he's been put on a coctail of meds to takle it. Heavy duty pain meds dont touch it but the gab and ??? (sorry my mind just blanked out of me) and its finally under control. It's probably worth talking to your doc about trying a combination until you find something that works for you. Other than that i'm out of ideas, sorry.
Oh could the diabetes be connected to your toes?
HUGS..........JJ
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