The Diabetes Forum Support Community For Diabetics Online banner

1 - 20 of 41 Posts

·
Registered
Joined
·
7 Posts
Discussion Starter #1
I'm not sure if this is the right forum in which to post this or not. Some of you have made helpful posts relating to my boyfriend's newly-diagnosed Type I diabetes and the severe pain he has been suffering relating to his neuropathy. We still have not found any relief, although he has been back to his doctor and is taking gabapentin and Metanx. The pain is unrelenting and he is still not getting more than perhaps three hours of sleep on a good night. He considers his situation hopeless and believes that the pain will never end. He will not go back to the doctor because as he puts it, they just take his money and do nothing to help. He wants to die. He's been dealing with this level of pain for at least a couple of months now. We've tried massage, a neuropathy oil, and several aromatherapy options, but nothing helps. He needs some relief from the pain because he has lost all hope. I know that depression is common after a diagnosis but I don't know how to handle this. Any recommendations? Thank you for your help.
 

·
Registered
Joined
·
165 Posts
has he tried another doctor? if he doesn't like/trust this one can he go for another opinion? not sure what other drugs are out there for him to try but he has talk w/ somone - thoughts about suicide are very serious. please watch out for him. hope someone else has better options for you

did a quick search on webmd.com might talk w/ your doc or the new doc about some of these:
"Ask about pain medications.
Pain can be a tricky symptom to control, so it may take time to find the right treatment for you. Cymbalta and Lyrica are the only FDA-approved medications for the treatment of painful diabetic neuropathy; however, your doctor might suggest other treatments that can be effective for pain control:

Creams or gels made from lidocaine, a topical anesthetic, or from capsaicin, made from crushed chili peppers.
Over-the-counter pain relievers such as aspirin, acetaminophen, naproxen, and ibuprofen.
Prescription-strength nonsteroidal anti-inflammatory drugs (NSAIDs)
Narcotics
Antidepressants such as amitriptyline, nortriptyline, or duloxetine.
Antiseizure medications such as Dilantin, Tegretol, gabapentin, or pregabalin
Or other medications block or reduce the release of chemicals that cause pain to be transmitted.
Try other therapies.
Acupuncture works to treat nerve pain for some people, says Trence, as does anodyne therapy, a treatment that uses infrared light to soothe pain, usually done in a physical therapy office.

"[Vitamin] B12 actually can work," says Trence. "The problem is that if you take too much of it, it can cause its own neuropathies."

Surgical decompression of multiple peripheral nerves (called the Dellon procedure) is an alternative method for treating diabetic neuropathy."
 

·
Registered
Joined
·
24,394 Posts
Gosh, B, I think he needs other opinions & a good comprehensive workup . . . this whole thing has been such rapid onset that it's hard to imagine there isn't more going on with him. If I went from feeling fit & healthy to constant agonizing pain week after week, I'd be ready to cash in myself. Is there any way he can see a new doc - a neurologist? He needs pain management until they can get to the bottom of this, and it looks to me like he's getting no help at all from his present medical team.
 

·
Registered
Joined
·
4,368 Posts
I am sorry he is going through this. Has he seen a pain management specialist. There are lots of things they can do for chronic pain now. My mom has to deal with constant pain due to compression fractures that never heal. They recently did a surgical procedure on her spine that has seemed to help.
 

·
Registered
Joined
·
930 Posts
just as being run over by a truck may not be related to diabetes, i think he should go to ER for X-rays to check for internal damage or acute infection not related to diabetes!
 

·
Registered
Joined
·
2,771 Posts
I'm not sure if this is the right forum in which to post this or not. Some of you have made helpful posts relating to my boyfriend's newly-diagnosed Type I diabetes and the severe pain he has been suffering relating to his neuropathy. We still have not found any relief, although he has been back to his doctor and is taking gabapentin and Metanx. The pain is unrelenting and he is still not getting more than perhaps three hours of sleep on a good night. He considers his situation hopeless and believes that the pain will never end. He will not go back to the doctor because as he puts it, they just take his money and do nothing to help. He wants to die. He's been dealing with this level of pain for at least a couple of months now. We've tried massage, a neuropathy oil, and several aromatherapy options, but nothing helps. He needs some relief from the pain because he has lost all hope. I know that depression is common after a diagnosis but I don't know how to handle this. Any recommendations? Thank you for your help.
There are many things that can help with neuropathy but you need to find a doctor who is willing to try different medications. I take gabapentin and the dose per each person is different, my podiatrist said that some people need a dose as high as 2700MG daily. I can only take 600MG in the AM and 600MG at bedtime, if I try to go any higher I get some unwanted side effects. You really need to try Lyrica or Cymbalta, one of these drugs that are for nerve pain from diabetic neuropathy. Also, there is oxycontin and morphine, they should be used with caution since they are controlled substances but they really do help pain associated with neuropathy. Get help NOW for your friend who feels that life is not worth living, he needs a psychiatrist because he has thoughts of suicide. Find help before he acts on his thoughts. I wish there was a pill that worked really well for neuropathy, but at the present time, there are only a few. Getting your blood glucose under control is absolutely necessary when neuropathy rears its ugly head. Good luck finding help and keep us posted on how your boyfriend is doing.
 

·
Registered
Joined
·
1,491 Posts
I don't have diabetic neuropathy, but I do suffer from chronic sciatica and lower-back nerve pain because of advanced osteoarthritis / spinal stenosis.

I too take gabapentin at about 1800mg per day. It helps somewhat. And yes, you can go quite high on the dose, but it's a balancing-act between side-effects and pain relief.

My Dr. also prescribed Tramadol which is a narcotic that targets neuropathy well. It's available in both time-release or single dosage and not nearly as potent/addictive as oxycontin or it's ilk.

More important than physical help might be some psychological help though. Suicidal ideation shouldn't be taken lightly. I'd strongly recommend a therapist be consulted in a situation like this. Unfortunately, us men somehow believe needing to see a therapist is a sign of weakness... when in reality it's a sign of strength.

I wish I could help... just know I've been there.
 

·
Registered
Joined
·
221 Posts
I'm not sure if this is the right forum in which to post this or not. Some of you have made helpful posts relating to my boyfriend's newly-diagnosed Type I diabetes and the severe pain he has been suffering relating to his neuropathy. We still have not found any relief, although he has been back to his doctor and is taking gabapentin and Metanx. The pain is unrelenting and he is still not getting more than perhaps three hours of sleep on a good night. He considers his situation hopeless and believes that the pain will never end. He will not go back to the doctor because as he puts it, they just take his money and do nothing to help. He wants to die. He's been dealing with this level of pain for at least a couple of months now. We've tried massage, a neuropathy oil, and several aromatherapy options, but nothing helps. He needs some relief from the pain because he has lost all hope. I know that depression is common after a diagnosis but I don't know how to handle this. Any recommendations? Thank you for your help.
Hi,
I am so sorry your boyfriend is going through this. I am wondering if he is not allergic to some ingredient in the insulin. I get neuropathy pain and it is quite a severe if I eat anything with High Fructose Corn Syrup, Corn Syrup, Corn Syrup Solids and Maltodextrin. I actually end up in agony for up to 24 hours plus my legs and feet swell up as well. It is no fun at all.
I am wondering if he should try different insulins. What insulins is he using right now. Maybe changing and using different insulins might actually help. Just a thought.
Let your boyfriend know we are all thinking of him and wishing him healing thoughts that the pain will go away and stay away.
 

·
Registered
Joined
·
7 Posts
Discussion Starter #11
I just want to say thank you for all of the input and support so far. We're trying several things and haven't had any luck yet. I really appreciate all of the ideas and suggestions, though. I know the answer is out there, we just can't give up hope. I'll let you know any progress that we make in the hopes that it can help anyone else out there is suffering similarly. He does have another appointment coming up soon with a new specialist, so fingers crossed. And I'm still researching some of the things that have been mentioned here, so again, thank you so much.
 

·
Registered
Joined
·
221 Posts
I just want to say thank you for all of the input and support so far. We're trying several things and haven't had any luck yet. I really appreciate all of the ideas and suggestions, though. I know the answer is out there, we just can't give up hope. I'll let you know any progress that we make in the hopes that it can help anyone else out there is suffering similarly. He does have another appointment coming up soon with a new specialist, so fingers crossed. And I'm still researching some of the things that have been mentioned here, so again, thank you so much.
I was also thinking of something but need some information. What were your boyfriend's blood sugars at diagnosis and how fast did they come down to within range of normal limits. I was reading here on another thread about insulin neuritis which can happen when one's blood sugars are lowered too fast after diagnosis. From what I gather the treatment is the same as for neuropathy and it can be confused with neuropathy as the symptoms are pretty much similar. I understand how frustrated your boyfriend must be. Tell him to hang in there. We do understand.
 

·
Registered
Joined
·
7 Posts
Discussion Starter #14
I was also thinking of something but need some information. What were your boyfriend's blood sugars at diagnosis and how fast did they come down to within range of normal limits. I was reading here on another thread about insulin neuritis which can happen when one's blood sugars are lowered too fast after diagnosis. From what I gather the treatment is the same as for neuropathy and it can be confused with neuropathy as the symptoms are pretty much similar. I understand how frustrated your boyfriend must be. Tell him to hang in there. We do understand.
Wow...that's a question that has not come up before. His blood sugars were over 500 when we went in, but came down very fast. He now generally stays between 75 (low, I know, I think his body is really struggling to maintain itself at this point) and 130. Most often 100-120, though. I will definitely look into that - no-one else has mentioned such a possibility before. Thank you!
 

·
Registered
Joined
·
221 Posts
Wow...that's a question that has not come up before. His blood sugars were over 500 when we went in, but came down very fast. He now generally stays between 75 (low, I know, I think his body is really struggling to maintain itself at this point) and 130. Most often 100-120, though. I will definitely look into that - no-one else has mentioned such a possibility before. Thank you!
It really is beginning to sound like insulin neuritis.
I think the treatment is the same though, but I will do some more research. If you don't mind I can ask on some of the other boards if anyone is familiar with it and if so what has helped with them. I will not mention your post here. Just let me know if that is okay
 

·
Registered
Joined
·
7 Posts
Discussion Starter #16
It really is beginning to sound like insulin neuritis.
I think the treatment is the same though, but I will do some more research. If you don't mind I can ask on some of the other boards if anyone is familiar with it and if so what has helped with them. I will not mention your post here. Just let me know if that is okay
*Any* help would be greatly appreciated!
 

·
Registered
Joined
·
213 Posts
Baggage, thoughts of suicide, even the wish to die, are not uncommon when someone gets discouraged with a major problem. Unremitting pain is certainly a MAJOR problem. A danger signal would be if he has a plan for suicide. Have a serious talk with him about that and certainly let his physician(s) know what he is thinking.
 

·
Banned
Joined
·
19 Posts
Hi, thats what I was like on Levemir, hands, shoulder, knee, back, all points of previous injury.
Stopping the levemir or the Lilly eqivalent meant the pain reduced.
What insulin is he on?
 

·
Registered
Joined
·
7 Posts
Discussion Starter #19
Quick update...another doctor's visit, but still no answers. After doing more research, I think insulin neuritis really may be what we're dealing with, but this podiatrist had never even heard of it. A neurologist is next on the list. The problem is, and I can't understand it, that his situation is still deteriorating. It's moved into his hands and is starting to go up his forearms now. His blood sugars are consistently right around 100, so I don't understand why it's still getting worse after four months. He's feeling so low and hopeless, I can't stand it. And I can't blame him for despair, because I know the body just doesn't have the reserves to function rationally when it is fighting constant pain and getting no sleep.
The podiatrist did give him Ambien and Lyrica instead of the gabapentin. The switch to Lyrica has left him with no relief from the pain at all while he waits for the Lyrica to build up in his system. And the Ambien gives him 2-3 hours of sleep, versus 0-1, so that's some progress. I really, really hope this neurologist has some answers or at least is willing to take enough of an interest to find some.
Thanks again to everyone for their support. As soon as anything works, I'll let you know in case it can help someone else.
 

·
Registered
Joined
·
2,771 Posts
Quick update...another doctor's visit, but still no answers. After doing more research, I think insulin neuritis really may be what we're dealing with, but this podiatrist had never even heard of it. A neurologist is next on the list. The problem is, and I can't understand it, that his situation is still deteriorating. It's moved into his hands and is starting to go up his forearms now. His blood sugars are consistently right around 100, so I don't understand why it's still getting worse after four months. He's feeling so low and hopeless, I can't stand it. And I can't blame him for despair, because I know the body just doesn't have the reserves to function rationally when it is fighting constant pain and getting no sleep.
The podiatrist did give him Ambien and Lyrica instead of the gabapentin. The switch to Lyrica has left him with no relief from the pain at all while he waits for the Lyrica to build up in his system. And the Ambien gives him 2-3 hours of sleep, versus 0-1, so that's some progress. I really, really hope this neurologist has some answers or at least is willing to take enough of an interest to find some.
Thanks again to everyone for their support. As soon as anything works, I'll let you know in case it can help someone else.
My blood glucose has been under decent control for about 15 months and I still have neuropathy. Good luck on switching to Lyrica. Ambien is great for sleep for some people but who sleeps through constant pain? Does your friend have a regular doctor? This doctor might be able to try to control the pain with something a little stronger. Thanks for the update.
 
1 - 20 of 41 Posts
Top