Increasingly Difficult to Accept Peripheral Neuropathy

Posted by fisbo @fisbo, Oct 10, 2022

I am finding it increasingly difficult to accept peripheral neuropathy it's all very well people coming up with suggestions but carrying them out is quite another. I am no longer who I was and think I am boring and miserable because I am now. Pain takes over and I have become fearful nervous prone to panic attacks which are awful because I start to shake with worrying about the future. I have other worries anyway but if this damned PN would go away it would help.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@frattmaa

I’m so sorry you are going through this. When we get diagnosed with any disease like PN we go through the different steps of morning. Neuropathy is not the end of the journey, it’s the beginning of a new one. I’ve had Autonomic Neuropathy along with Small Fiber Sensory Neuropathy for 15 years. You can survive this and you can prosper. We have all found ways to cope which gives you a measure of control.
Hang in there ( it’s not easy to say because I’ve had all the battles) but you could have gotten news that’s much more difficult to deal with.
Stick with us, we’ll help you through this.

Jump to this post

Could you tell me how you were diagnosed with autonomic neuropathy. I had Quarst test and it was normal. Sweating has become a big problem for me. I have stenosis in back and cervical stenosis. I am going to Hersehy Spine Institute to be seen there. Don't know if autonomic dysfuntion is connected to stenosis. I don't have access to good doctors in Pittsburgh.

REPLY
@lewin

Could you tell me how you were diagnosed with autonomic neuropathy. I had Quarst test and it was normal. Sweating has become a big problem for me. I have stenosis in back and cervical stenosis. I am going to Hersehy Spine Institute to be seen there. Don't know if autonomic dysfuntion is connected to stenosis. I don't have access to good doctors in Pittsburgh.

Jump to this post

Sweating so profusely is what started. I was in the emergency room having what they called a neurological storm ( it’s like dying but you don’t die. I’ve been through so many and each one I prayed to God to just let me die). You sweat like crazy, projectile vomiting, pain like I’ve never had before leg and hand tremors and I was in the fetal position, my heart rate was 170-180. A doctor who was a neurologist from a different hospital in Detroit was moonlighting helping out in the ER. When he saw me he knew exactly what was happening. He told them to hang 2 bags of NACL ( normal saline) and when that was done to hang 2 more bags. For dehydration. Then he instructed the nurse to give me bolus shots of morphine and Valium and within 10 minutes I was normal again.
The sweating I had all the doctors and paramedics never saw such a thing in the careers. I told them just let me walk around the hospital I will sweat so bad I would need to change my cloths.

REPLY

I am in desperate pain with the above condition. I take Pregabalin 150mg which will be increased to 2 00mg but it isn't working very well at all. Trouble is coming off it and might be even worse still. I am hoping that the doseage will be increased to a level that works for the pain. I cannot do much because of it save sitting around. No good but I am depressed and anxious because of it. What to do?

REPLY
@fisbo

I am in desperate pain with the above condition. I take Pregabalin 150mg which will be increased to 2 00mg but it isn't working very well at all. Trouble is coming off it and might be even worse still. I am hoping that the doseage will be increased to a level that works for the pain. I cannot do much because of it save sitting around. No good but I am depressed and anxious because of it. What to do?

Jump to this post

Hello,
I have recently been diagnosed with PN and I am in pain all day. I don't have any specific diagnosis yet. MRI scheduled for this Friday. The cold has also increased my pain level, and I am getting about 4-5 hours ""sleep". I have no idea what is causing most of my body to have these terrible sensations The other thing is that there seems to be no cure. We have to find ways of managing the pain, and psychological troubles. It is certainly not easy, and there seems to be no help. We do have to journey through life on our own, but it would helpful if people could hear how we are suffering. There are support groups. Some of them have Zoom meetings. It is a tough one...oh, I am 70 years old.

REPLY
@pacodennis

Hello,
I have recently been diagnosed with PN and I am in pain all day. I don't have any specific diagnosis yet. MRI scheduled for this Friday. The cold has also increased my pain level, and I am getting about 4-5 hours ""sleep". I have no idea what is causing most of my body to have these terrible sensations The other thing is that there seems to be no cure. We have to find ways of managing the pain, and psychological troubles. It is certainly not easy, and there seems to be no help. We do have to journey through life on our own, but it would helpful if people could hear how we are suffering. There are support groups. Some of them have Zoom meetings. It is a tough one...oh, I am 70 years old.

Jump to this post

I am 65 my pn is in the feet and lower legs presumably you are same? It is a lonely journey as I feel that nobody really listens or particularly cares this is what makes it so awful. I spend days just laying down. I swim but that's not what it used to be and I find myself more like a beginner in the pool I am so slow now. This pn is no joke is it and what the hell are we supposed to do? There has to be a reason and cause and that in turn should be remedied that's how I see it. I am sure if we were famous it would be cured or at least remedied in some way to ease the pain.

REPLY
@pacodennis

Hello,
I have recently been diagnosed with PN and I am in pain all day. I don't have any specific diagnosis yet. MRI scheduled for this Friday. The cold has also increased my pain level, and I am getting about 4-5 hours ""sleep". I have no idea what is causing most of my body to have these terrible sensations The other thing is that there seems to be no cure. We have to find ways of managing the pain, and psychological troubles. It is certainly not easy, and there seems to be no help. We do have to journey through life on our own, but it would helpful if people could hear how we are suffering. There are support groups. Some of them have Zoom meetings. It is a tough one...oh, I am 70 years old.

Jump to this post

In reply to @pacodennis Have your ever used cipro or any other antibiotic of the fluoroquinolones family if you can recall.
I understand these antibiotics are known for their serious long lasting if not permanent side effects encompassing symptoms ranging from psychiatric and sensory disturbances to problems with muscles, tendons and nerves that continue after people have stopped taking the drugs. They call it being 'floxed'

REPLY
@pacodennis

Hello,
I have recently been diagnosed with PN and I am in pain all day. I don't have any specific diagnosis yet. MRI scheduled for this Friday. The cold has also increased my pain level, and I am getting about 4-5 hours ""sleep". I have no idea what is causing most of my body to have these terrible sensations The other thing is that there seems to be no cure. We have to find ways of managing the pain, and psychological troubles. It is certainly not easy, and there seems to be no help. We do have to journey through life on our own, but it would helpful if people could hear how we are suffering. There are support groups. Some of them have Zoom meetings. It is a tough one...oh, I am 70 years old.

Jump to this post

Good morning,
I am sorry to hear you have been diagnosed with neuropathy, it is a very challenging disorder. I understand your pain and frustration. I find that I have good days and bad days and when I have a good day I thank God and take full advantage of it, I am out enjoying life.
Diet plays an important part of pain management, limiting sugars and carbs is important! It has been suggested that high protein diets often help ease the pain caused by neuropathy. I also suggest eliminating any alcohol use. Stress management is also recommended, perhaps a walk in a local park to enjoy the fall colors and smells. Exercise is also a very important piece that decreases the pain. Please continue to see your healthcare provider and participate in your care management.
Please know you are not on your own with this challenging disease, we the many that have some type of neuropathy are there with you. Please stay in contact.
Kim

REPLY
@nukhan

In reply to @pacodennis Have your ever used cipro or any other antibiotic of the fluoroquinolones family if you can recall.
I understand these antibiotics are known for their serious long lasting if not permanent side effects encompassing symptoms ranging from psychiatric and sensory disturbances to problems with muscles, tendons and nerves that continue after people have stopped taking the drugs. They call it being 'floxed'

Jump to this post

YES! My wife and I were just discussing this last night. It was Levaquin. After using it for only 4 days I quit, then I tore my Achilles heal. Then I had shoulder and neck pain that turned into headaches that turned into burning feet, legs, abdomen, ears, and sinuses. Nerve damage? I think it played a significant role. Thank you for the heads up. How about you?

REPLY
@frattmaa

Sweating so profusely is what started. I was in the emergency room having what they called a neurological storm ( it’s like dying but you don’t die. I’ve been through so many and each one I prayed to God to just let me die). You sweat like crazy, projectile vomiting, pain like I’ve never had before leg and hand tremors and I was in the fetal position, my heart rate was 170-180. A doctor who was a neurologist from a different hospital in Detroit was moonlighting helping out in the ER. When he saw me he knew exactly what was happening. He told them to hang 2 bags of NACL ( normal saline) and when that was done to hang 2 more bags. For dehydration. Then he instructed the nurse to give me bolus shots of morphine and Valium and within 10 minutes I was normal again.
The sweating I had all the doctors and paramedics never saw such a thing in the careers. I told them just let me walk around the hospital I will sweat so bad I would need to change my cloths.

Jump to this post

Terrible to hear of your suffering. I try not to take duoxeltine because I am afraid it makes me sweat. I use clonazpam but I have stenosis of neck and some in back. I wish there was somewhere you could go to get some help. I stay away from eating all sugar and carbs. We may all have different reasons for neuropathy. Someone mentioned antibiotic quinoline. I wish we had a health care system that cared and not driven by profits. I don't know how to help you.
I am so sorry. Where are mentors from Mayo.

REPLY
@lewin

Terrible to hear of your suffering. I try not to take duoxeltine because I am afraid it makes me sweat. I use clonazpam but I have stenosis of neck and some in back. I wish there was somewhere you could go to get some help. I stay away from eating all sugar and carbs. We may all have different reasons for neuropathy. Someone mentioned antibiotic quinoline. I wish we had a health care system that cared and not driven by profits. I don't know how to help you.
I am so sorry. Where are mentors from Mayo.

Jump to this post

I appreciate your note. But I’ve already come to grips where I’m at and the decline that follows. But thank you!

REPLY
Please sign in or register to post a reply.