[Lindyloowho1234]

My 65 year old husband was diagnosed with idiopathic PN in his feet 12 years ago. During the last 7 years it has been evident in his hands as well. He also has ventricular tachycardia, sleep apnea, under active thyroid, gastric issues and difficulty urinating at times, and two large patches of irritated, blistery skin on both lower legs that never seem to heal properly.

He was on 3600 mg of Gabapentin, 100 mg of amitriptyline, 90mg of Hydromorph Contin, as well as Oxycodone for the breakthrough pain. He’s also on meds for the thyroid and heart issues. He had also tried 1mg of Nabilone which initially seemed to help, but then didn’t, so he stopped taking it.

He went for his normal neurologist checkup a month ago and he was concerned at the rate of progression in his hands and feet/legs. Two weeks ago the pain in his hands went off the chart, in just two days, with the end result he is now on a Fentanyl Patch 75mcg/h every other day, and 5mg Oxycodone as needed.
He is off the Hydromorph and being weaned off the Gabapentin.

He is due to have the usual glucose tests and autoimmune tests, but they have always showed up normal in the past.

Everything I’ve read has never mentioned such extreme pain in the hands, any articles always seem to refer to the foot pain.

It’s so very hard not knowing what to do for someone in that much pain, and watching your “tough guy” husband be reduced to sobbing in pain, barely able to walk, or hold anything. Thank goodness for an understanding GP! The patch has certainly helped a lot and he’s said he can cope with the current pain in his hands, but of course his concern is what happens when this medication stops working.

• Anyone else got it this bad in their hands?
• Any ideas on why it spiked so dramatically, and so quickly?
• Anyone with experience of long term Fentanyl use?
  

Sorry this is a long post, thanks………..

[caroline2]

I've been talking to others and do a search of:

Grape Seed Extract and Neuropathy

A friend was on Neurontin for 8 yrs and is off the "N" and could not tolerate Lyrica.

Since on grape seed ex she is doing much better. She says it's ideopathic but I wonder about diabetes. She's mentioned borderline, so that's my thinking. She does not WATCH sugar/carbs.....

Grape Seed Ex has SO MANY benefits for so many health conditions. I'm headed to 20 yrs on OPC's...mainly grape seed extract.

Disclaimer: if one takes a pharma blood thinner, then can't take OPC's (grape seed ex, pycnogenol or resveratrol)...can't take both.

[loupy57]

I get pains in hands and feet! And it crawl up my legs in the evening! I have auto immune illnesses, RRMS and Dysautonomia, sounds like the checks are for a dysautonomia problem? MRI scan and look for damage on the vagus nerve, that's what I have been told to get them to look at. I failed the glucose tolerance test badly, glucose intolerant and bad reactive hypoglycemia both related to a Dysautonomic problem and I blackout if I have glucose or starches! Yikes! But got used to it and my husband doesn't panic so much when I just 'go' . I can't wear patches due to allergies and ended up at pain management, on oxycodone/naloxone slow release tablets and got liquid to use out of tablets times. Pain management were amazing!!!!! Here if you want a chat xx


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[mrsD]

Originally Posted by Lindyloowho1234

My 65 year old husband was diagnosed with idiopathic PN in his feet 12 years ago. During the last 7 years it has been evident in his hands as well. He also has ventricular tachycardia, sleep apnea, under active thyroid, gastric issues and difficulty urinating at times, and two large patches of irritated, blistery skin on both lower legs that never seem to heal properly.

He was on 3600 mg of Gabapentin, 100 mg of amitriptyline, 90mg of Hydromorph Contin, as well as Oxycodone for the breakthrough pain. He’s also on meds for the thyroid and heart issues. He had also tried 1mg of Nabilone which initially seemed to help, but then didn’t, so he stopped taking it.

He went for his normal neurologist checkup a month ago and he was concerned at the rate of progression in his hands and feet/legs. Two weeks ago the pain in his hands went off the chart, in just two days, with the end result he is now on a Fentanyl Patch 75mcg/h every other day, and 5mg Oxycodone as needed.
He is off the Hydromorph and being weaned off the Gabapentin.

He is due to have the usual glucose tests and autoimmune tests, but they have always showed up normal in the past.

Everything I’ve read has never mentioned such extreme pain in the hands, any articles always seem to refer to the foot pain.

It’s so very hard not knowing what to do for someone in that much pain, and watching your “tough guy” husband be reduced to sobbing in pain, barely able to walk, or hold anything. Thank goodness for an understanding GP! The patch has certainly helped a lot and he’s said he can cope with the current pain in his hands, but of course his concern is what happens when this medication stops working.

• Anyone else got it this bad in their hands?
• Any ideas on why it spiked so dramatically, and so quickly?
• Anyone with experience of long term Fentanyl use?
  

Sorry this is a long post, thanks………..

Welcome to NeuroTalk.

I have to ask right up front.... is your husband exposed to chemicals, or toxins? Certain heavy metals will cause a painful PN like you describe. He should have some heavy metal testing.

Also use of solvents, to clean the hands, can be very problematic. These are defatting agents and damage the nerves.

We really need more information from you about his medical testing and history. Some doctors just don't go deep enough into the testing to find causes for PN.

[janieg]

Originally Posted by Lindyloowho1234

mune tests, but they have always showed up normal in the past.

Everything I’ve read has never mentioned such extreme pain in the hands, any articles always seem to refer to the foot pain.

Sorry to hear your husband is suffering so badly.

What you're describing is referred to as "stocking-glove distribution," and having the hands affected is not unusual.

I can't speak to the cause as to the sudden onset, but I was in the same boat...only body-wide. It was as if someone flipped a switch while I was sleeping. Thankfully I don't have it too bad in my hands, just mild sensations.

Usual glucose screening consists of Fasting Blood Glucose and A1C. People can have Impaired Glucose Tolerance and still have normal readings for those. (I'm one.) Some researchers are recommending that anyone with idiopathic neuropathy get the Oral Glucose Tolerance Test to rule out "hidden" glucose issues. It seems neuropathy can be the first sign of a problem.

http://www.jabfm.org/content/17/2/127.full


___________________

[Susanne C.]

I have a long standing hereditary neuropathy, and while it started with most symptoms in the feet and legs it has progressed to my hands, with increasingly severe symptoms. It was not as sudden in onset as you describe, but over the course of the last few months it has begun waking me in the middle of the night with severe pain and burning and while I have woken up with numb hands and arms for years the burning and pain upon awakening are recent developments as is the general increase in hand pain.
Like your husband I am on long acting pain medication, 90 mg. MS Contin per day with oxycodone for breakthrough pain. Even with this the pain in my hands is distinctly worse than a few months ago.
It can be a normal progression of this disease for the pain to develop and worsen in the hands and arms.
Sometimes I think if we are on heavy pain meds the symptoms can escalate quietly and what may seem like a sudden onset was really normal progression masked by the pain meds. When the pain surpasses the threshold of our meds alarms go off.
Fentanyl is somewhat of a high end choice and seems to be reserved for when other opiates have failed to control the pain. I am not sure there is anyone on the forum currently taking it but I do not think that it differs significantly from other opiates in long term use.
You are fortunate that you have an understanding GP. Try not to worry too much about what happens when this doesn't work. There are combinations of meds that work and new things in the pipeline. If he has obtained relief in the past with pain management something will be there for him as long as you have a good doctor.
I am 53 and will be relying on medication for the rest of my life, so do a fair amount of research. Practical Pain Management, an online magazine for doctors, is an excellent source of information on the state of the art.

[Kitt]

Welcome Lindyloowho1234.

[Lindyloowho1234]

Many thanks to everyone who replied. Susanne it does make sense that this has been quitely bubbling away until the meds could prevent no more Definitely in the last three months his bad days were outweighing his good ones. I just never thought about it until you put it in perspective.

Mrs. D - yes he was a truck mechanic all his life so exposed to solvents, waste oil etc. Before the days when they wore gloves! We were also born and lived in an area in England where they tested atomic weapons - although we were constantly assured there had been no radiation leaks I have my doubts

Do we just ask for heavy metal testing to be done? Is it a common test? Even if it comes back postive would it help though? Surely the damage is done?

He has had the oral 2 hour glucose test periodically over the years and his range is always normal. Other tests: C3, ESR, Anti DNA and ENA. Also tested for MS.

What else should be looked at?

I assumed this is also affecting his automatic nerves just by what I've read, although no one has suggested this.

Linda

[mrsD]

Yes, testing for heavy metals can be done. I don't know about where you are however. But I would investigate this.

Manganese, chromium, lead, arsenic and mercury.

There are chelation treatments, but I don't know if the damage now is so bad that they could work.

I also think some paraneoplastic testing to see if he has a hidden cancer...lung and bone marrow. Sometimes this type of PN appears before the cancer symptoms. Early detection therefore may help with longevity of the cancer treatments if cancer is present.

[Lindyloowho1234]

Originally Posted by Lindyloowho1234

My 65 year old husband was diagnosed with idiopathic PN in his feet 12 years ago.
Two weeks ago the pain in his hands went off the chart, in just two days, with the end result he is now on a Fentanyl Patch 75mcg/h every other day.

Just an update after seeing the Neurologist again yesterday. He went up to 100mcg/h Fentanyl every other day shortly after I posted this and it seems to help. His hands are still sore, but he can cope with it.

All his regular blood tests came back normal (as they always do) - 2 Hr. Glucose was 5.6.

The Neuro is now sending him for a test for Fabry Disease, although he said it normally manifests in childhood? Extreme hand pain is one of the symptoms, but everything else I've read about it doesn't seem to apply to him.

He also said autonomic neuropathy would make him loose the ability to sweat, not sweat profusely as he does - is that correct? I'm sure I've read it could be either.

Is the neurologist just "stabbing in the dark"?
He did admit that he's never seen such horrendous pain from sensory SFN.
Anyone else familiar with Fabry disease and is it likely to show up in an adult?

Thanks, Linda