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Old 02-17-2008, 07:56 AM   #1
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masayea HB User
Unhappy Rapidly Losing Hope...

I am a 50 year old woman who has been living with diabetic PN for 6 years now. I have run the gammet of all the testing, and experimenting with treatments, and am currently on 300 mg of Lyrica per day and 10/500 mg of hydrocodone 4 times a day. The medication takes the edge off the pain sometimes, but more and more I am not getting the relief I need. I am in a wheelchair, but try to walk a little each day as I have heard that walking helps with the pain. My feet and legs are extreemly hypersensitive and my pain is excruciating, especially at night. 'I am on medicaid now because I can no longer work, and my doctor just rushes me in and out of my appointments, most times spending not even 5 minutes with me. I have a 15 year old son at home, and he is the only reason that I still am on this earth. I don't know how much longer I can deal with this pain. I think about just ending it all every day. Suicide would have never crossed my mind 10 years ago, but chronic pain is so very hard to live with. I have no support system, both my parents are deceased, and I have no brothers or sisters. I guess I am here for some encouragement and understanding, and maybe some hope...something to keep me going. Can anyone out there help?

 
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Old 02-17-2008, 10:18 AM   #2
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Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Rapidly Losing Hope...

Hi masayea, sometimes we can build up a tolerance for drugs thus making them less affective over time, but you really need a doctor that has got time for you and properly listen to your needs and adjust your medication accordingly, perhaps a refferal to a pain specialist may be a better option.

There has been some promising studies of the supplement " Alpha Lipioc Acid " helping diabetic PN patients eleviate some of their symptoms, in my research i found that in Europe they have been treating diabetic pn with ALA in perscription form for about 50 years, you may like to do an internet search on ALA to read all the info on it, i have been using it myself and found it defiantly helped me.

I do hope you can find some relief very soon.
Aussie

Last edited by Aussie100; 02-17-2008 at 10:20 AM.

 
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Old 02-17-2008, 08:21 PM   #3
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unsinkable47 HB User
Re: Rapidly Losing Hope...

Hi Masayea,

I am sorry to hear that you are having such a hard time. I can relate to what you are saying about your medical care. I can no longer work either and I now have "WONDERFUL!" medicaid. Of course it is better than nothing but it does make a difference on what kind of medical care you receive..

A friend of mine and I were just talking a few hours ago about the pain and discussing how hard it is sometimes to keep moving forward. I never would have had thoughts of ending it either before I started living with chronic pain. The pain seems to be the main focus of our lives doesn't it. Trying to get thru the day everyday.

I try to remember that there is someone else out there that is worse off than I and I just try to take a day at a time. I keep thinking about if I were no longer here, I would miss out on the great things in life, like my children and grand children.

Also coming here to vent and see that you are not alone may also help.

Please take care and try to find another doctor, I know it is not easy though with a medicaid card but keep looking. I travel to Chicago to see a specialist. I can't drive that far it is about a 3 hour drive so I have to find someone to take me. But I could not find quality health care here with a medicaid card so I found a wonderful hospital in Chicago. It is a Jewish hospital, I seem to have a lot more luck with them than anyone else. They treat you really nice also.

So, if you can find a clinic/hospital like that would probably be your best bet. Hopefully you won't have to travel as far.

Wishing you the best!!

 
Old 02-18-2008, 09:45 AM   #4
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masayea HB User
Re: Rapidly Losing Hope...

Aussie,
Thank you for the reply. I really need some feedback, as I have become so despondant in the last 6 months, and really have no one to vent to. I have read a bout ALA, but have not tried it as of yet because I have gone through so many types of treatment, ( everything from topical creams to the "Rebuilder" tens unit, primrose etc...) and have not seen any results. I also went to a pain managment clinic for about a year. They taught me bio-feedback and breathing techniques, all with the same results...no relief. And you are right, I have built up a tolerance to the drugs. I have been on this dosage of Lyrica and hydrocodone for 2 years now. I think I will talk to my dr about ALA though, what I have read seems to be very encouraging.
This disease has consumed my life. I have gone from a very independant, business owner who raised 3 boys on my own, with no child support of any kind, always upbeat, you know the type, the one whom everyone turns to for advice and encouragment,...to this stranger whom I don't even recognise. Over the last few years I have tried to keep a positive outlook and smile through the pain, but recently I am losing that battle. I am sure you know about sleepless nights, and i think that the lack of sleep contributes to my state of mind. I have slept a total of 5 hours in the last 4 days due to the pain. I used to take Ambien for sleep, but I really hate being so dependant on all these drugs, and alot of times, the pain just broke through the effects of the Ambien and I was awake through the night anyway, just in a doped up state of mind.
I have a miriad of other health issues, including osteoarthritis in my hands and knees, which also contribute to my pain issues, and sometimes I just want to take all these drugs and flush them all down the toilet! There just has to be a better way!
I am going to talk to my dr about the ALA, and give it a try. And I think I may try and search for a new dr...maybe a neuro who specializes in PN.
Again, thanks for lending an ear, and the reply. It helps to know there is someone out there who cares.




Quote:
Originally Posted by Aussie100 View Post
Hi masayea, sometimes we can build up a tolerance for drugs thus making them less affective over time, but you really need a doctor that has got time for you and properly listen to your needs and adjust your medication accordingly, perhaps a refferal to a pain specialist may be a better option.

There has been some promising studies of the supplement " Alpha Lipioc Acid " helping diabetic PN patients eleviate some of their symptoms, in my research i found that in Europe they have been treating diabetic pn with ALA in perscription form for about 50 years, you may like to do an internet search on ALA to read all the info on it, i have been using it myself and found it defiantly helped me.

I do hope you can find some relief very soon.
Aussie

 
Old 02-18-2008, 10:07 AM   #5
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Re: Rapidly Losing Hope...

Thank you so much for your kind words. It really does help to have someplace to vent. Like you ,I try to cope by thinking about my children and grandbaby, but after awhile even that doesn't help as I think that they would be better off without the burden of having to take me to the dr, getting groceries...all the things that our caregivers so lovingly do for us who can't do for ourselves. As you can see, I am in a really bad place right now inside myself...even my faith in God is changing. Where I used to pray for others and count my blessings, including the small things in life like the beautiful sunrises and sunsets that He paints anew each day, now I just pray that He takes me Home soon.

I am going to try and find a new dr. I feel that the one I am seeing now has not been helping me the way I need. I hate being on the narcotic, and have told him so on many occasions, but he just tells me that there is no other alternative. I have scoured the internet, looking for something ...anything...to help, and have tried many of the things out there, including all the "snake oil" remedies...it's sad that we can so easily be taken advantage of when we are desperate.

I do so appreciate you. I really need someone to talk to who understands my situation. That is why I came to this site. When I get to those really hard bumps in the road, I just need someone to help me get through it. I know that there are many out there who suffer the same as I do, and we need to support each other. Sometimes there is no drug, or therapy that can help, but the human spirit of campassion can heal in ways that is beyond our understanding. Thank you.



Quote:
Originally Posted by unsinkable47 View Post
Hi Masayea,

I am sorry to hear that you are having such a hard time. I can relate to what you are saying about your medical care. I can no longer work either and I now have "WONDERFUL!" medicaid. Of course it is better than nothing but it does make a difference on what kind of medical care you receive..

A friend of mine and I were just talking a few hours ago about the pain and discussing how hard it is sometimes to keep moving forward. I never would have had thoughts of ending it either before I started living with chronic pain. The pain seems to be the main focus of our lives doesn't it. Trying to get thru the day everyday.

I try to remember that there is someone else out there that is worse off than I and I just try to take a day at a time. I keep thinking about if I were no longer here, I would miss out on the great things in life, like my children and grand children.

Also coming here to vent and see that you are not alone may also help.

Please take care and try to find another doctor, I know it is not easy though with a medicaid card but keep looking. I travel to Chicago to see a specialist. I can't drive that far it is about a 3 hour drive so I have to find someone to take me. But I could not find quality health care here with a medicaid card so I found a wonderful hospital in Chicago. It is a Jewish hospital, I seem to have a lot more luck with them than anyone else. They treat you really nice also.

So, if you can find a clinic/hospital like that would probably be your best bet. Hopefully you won't have to travel as far.

Wishing you the best!!

 
Old 02-18-2008, 12:07 PM   #6
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Re: Rapidly Losing Hope...

I know another long time Pn'er who has idiopathic PN who had tried everything out there for pain relief but nothing worked for him, until he started using the duragesic patch, [ i don't know the strength he uses ] but now says he lives pretty close to a normal life again, he swears by them so i am wondering if you have tried them, just a thought.
regards
Aussie

 
Old 02-19-2008, 09:50 AM   #7
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Don12345 HB User
Re: Rapidly Losing Hope...

I don't know how you feel about exercise but it would be a big help to you. I am 65 and have PN which is very uncomfortable at times especially when I go to bed at night. But you know all about that!

I go to a fitness center 3 days a week and use their stationary bike and treadmill. It is wonderful exercise for PN and also for anyone with arthritis who should keep on the move and get some exercise.

At the fitness center, I see people in wheel chairs who come for exercise. They work at a very slow pace, of course. But if you could manage such, you may find that i will help. I take 600 mg of Neurontin 3 times daily. But I still have some pain, but I think with the exericse the pain is not as bad as it would be without it.

Yes, there are people in much worse shape than we are. You wouldn't know anything about it, but I have lost most all my hearing. I have lost communication with the outside world and I really miss being a part of it. I have great difficulty even watching TV and the closed captioning goes so fast I don't have time to read it.

So, I'm saying that maybe you could look to a brighter side of life. If you have your hearing, you are definately very fortunate.

So, try to find a new doctor or pain clinic as has been suggested and see if you can get some good exercise. Get some new medication and don't give up. You have so much to live for.

My two cents worth.

Sincerely,
Don

 
Old 02-19-2008, 11:52 AM   #8
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masayea HB User
Re: Rapidly Losing Hope...

Thanks again Aussie for the suggestion. I did some research on the dermagesic patch, and it seems to be a very strong narcotic, that has had a very high death rate due to accidental overdose. Not that I would ever abuse the drug, I have a hard enough time dealing with the hydrocodone, and never take more than the prescribed dose as I am afraid of it. Does your friend have any problems with side effects? I see my dr on March 10 and am definatly going to ask about the ALA. I will bring up the patch also. I have been calling around to find a neurologist, but no luck so far. Drs just don't want to take medicaid, and the hotline for medicaid referrals has sooo many out of service phone numbers, or the dr has quit taking medicaid...but I will not give up! My grand daughter was here this weekend, and said that she wants her daddy to take her to the grocery store so that she can buy me new legs, she said she has saved 76 whole cents and did I think it would cost more than that. She is 3 years old, and I just don't want this dumb disease to cause me to miss out on her growing up. ....Just a thought...do you think that there might be something else wrong with me besides the neuropathy that could be causing such agonizing pain? I was diagnosed 8 years ago, and started neurontin therapy 6 years ago when I started having weakness in my calves and pain in my feet. Over the years my pain and weakness has progressed, as has my dosage of meds. I switched to Lyrica because I could take lower doses than the neurontin. The last EMG I had was in 2006, to give the dr an idea of how far the disease had progressed. I don't look forward to taking that test again, but if I have to I will. I really need to find a good dr who will work with me. I even have to remind the one I have now to get labs done once every 90 days to check my liver. I just feel that he doesn't care, and I am sure that it is because I am now on medicaid.
I will keep trying to find a new dr and try the ALA, and maybe even the patch. Thanks again for all your help.

 
Old 02-19-2008, 11:59 AM   #9
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masayea HB User
Re: Rapidly Losing Hope...

Hi Don,
Yes, I do believe in excercise. I try to walk everyday, but have trouble due to weakness in my calf muscles and of course the pain. I fall a lot, and always try to get a neighbor over to keep an eye on me when I walk. Maybe a stationary bike would be a better choice for me. I think I will try and find one at the goodwill. I could probably pick one up pretty cheap. Thanks for the suggestion....

 
Old 02-19-2008, 05:33 PM   #10
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Re: Rapidly Losing Hope...

Hi again masayea, we are all different in our reactions to medications, there is no one fits all sorta thing but the person i spoke of is elderly, nearly 80 years of age and says now is able to enjoy his life because of those patches were beforehand he said he had a very low quality of life, he reports of no problematic side affects using those patches, but again that's only him.

I can well understand your concern using narcotic pain relief, it is paramount that they must be used strictly as prescribed & under the close supervision of a physician or better still a pain specialist who is more experienced in dealing with these stronger medications.

I guess that you are keeping a tight control of sugar levels to prevent any further nerve damage, you might have read that ALA taken in very high dosages can have possible lowering affect on your blood sugar levels so it would be wise to tell your doctor who treats your diabetes if you decide to start using ALA supplements in conjunction with other diabetic medications.

I wish you the best in finding a good doctor that will work with you through this, it was so nice of your grand daughter to offer her fortune to help you take care,
Aussie

 
Old 02-19-2008, 05:50 PM   #11
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georgi HB User
Re: Rapidly Losing Hope...

Hey Masayea,
I have been afraid to take meds for pain too. Just remember, that everything in life is Risk to Benefit. I was on the Hydrocone too and after a year, it no longer worked. It was not the best choice for my pain. My doctor started me on oxycontin. I was scared to death to take it, but I did. I have to say that it really worked well. It is kind of like the patch. It works for a longer period of time. It does not give you a high feeling, just lets me go through the day feeling as close to normal as possible. Please don't be afraid of asking your doctor about the patch or the oxycontin IR. Hang in there!!!!
georgi

 
Old 02-19-2008, 10:41 PM   #12
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woondog HB User
Cool Re: Rapidly Losing Hope...

I agree with the majority of the communicants on this thread.
1. If you are prescribed medication for your pn and it doesn't work.
it is time for a new drug.
2. If you again get a medication that does not work, time to get a
new drug.
3. If you doctor will not give you a stronger dose or stronger medication, time to get a new doctor.
4. Unless you have been a druggie or an alcoholic, there is a very slim chance
you will become addicted to the more potent medications such as the opiates,
etc.
5 Exercise is hugely important. If you are not able to do much because
of pain, say, while you are on the treadmill, you will in due course.
The exercise releases endorphins in you system and one can go from
intense pain to feeling pretty good in short time. You have to work thru
the pain. Now that I am taking nortryptiline and dilaudid (an opiate),
I rarely have pain but, say, once a month when I have had too many
carbs, I have pain all night that keeps me awake through the night.
The YMCA opens at 5:30 pm and get my backside on the treadmill and
within 30 minutes, 4.1 speed, 15.0 incline, the pain mostly goes away.
Yup, the endorphins are my pain killers and they also make you
energetic and happy.

6. Chin up! You know there are lots of people out there in blogland
that suffer equally or more re: duration and intensity.

7. If you have diabetic PN, pay attention to your intake of
carbs/sugars. Very important. the woondog

 
Old 02-20-2008, 11:03 AM   #13
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masayea HB User
Re: Rapidly Losing Hope...

Hey Everybody
I want to thank all of you for the feedback. Good News! I finally found a neurologist in my area that accepts medicaid, and spoke with his nurse this morning. I told her that I had been having a very hard time with pain managment and that I really needed a dr who would take time with me to help me find what works. I told her that I did not want to waste my time or theirs just going through the same old routine of being rushed through my appointments, and she assured me that the dr was a very caring man who understood the difficulties with finding a dr who accepts medicaid that will treat you the same as someone with other insurance. So....I am feeling that maybe this time, I may have found a good dr. My appointment is on March 19 and I am sure that between now and then I will still need ya'lls moral support...so keep some positive energy coming my way....and I will keep you posted.

 
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