PHN-life and death

There are a lot of suggestions out there, some work better than others and it's individual. If you say you've tried everything, I'm not sure what I can suggest. However, is there anything that helps a little? Focus on that, if there are things, like stress or certain movements that make it worse, try and avoid that. Sometimes, the hardest part, but which may help, is accepting that it may not get a whole lot better or as quickly as you'd like. Maybe you'll be pain-free, or at least have a lot less when you take a shower, or watch a good movie, or read a good book, or sit outside and enjoy a beautiful day. Those all count in helping you.

Charlie had a thread about depression and PHN I found very helpful. I'll see if I can find the link to it. It's not just about depression, it's about learning how to deal with our new normal and find ways to make it easier.

Hi Beverly,

Babs asked me to find the forum on Depression and PHN for you. There are two that she might be talking about. Go to the top of this page and click on “Discussion Forums.”  Then keep scrolling down and loading more pages until you find “Depression and PHN,” and another one, “Cognitive Behavior Therapy (CBT) and PHN.”  I’m a retired clinical psychologist with PHN, and have commented on CBT a lot in the past. 

Thanks Charlie. Beverly, when I was really down and struggling with the pain and the many changes to my life, those posts really helped. I've always been a very pragmatic, logical and slightly negative person, to tell the truth, but I knew I had to change the way I was dealing with this. I'm not a Susie Sunshine now, but I do try and appreciate the positive more and dwell MUCH less on the negative. And if I have a bad day and get really down? I don't beat myself up about it but try and remember that maybe I'll feel better soon.

If medical medical cannabid

is available

try it to. I like vaporizer e cigartte.

of course you will get stoned

thats the point

all of Us in this hell deserve some relief.

 

also

please DONT WASTE YR, MONEY ON STEM CELL THERAPY.

DONT TRUST ANYONE WHO SAYS THIS IS A TREATMENT.

I HAVE BEEN WIth this PHN since 2012.;

i know all the literative.

please don’t let come quack take advantage of you.

.

 

Lisa,

Would you mind providing more detail as to the stem cell treatment you had. I have been following this for quite some time and one thing I did find out is that there is a lot of misinformation, claims etc. Further, there are a lot of people jumping on the quick buck band wagon and they will tell you anything to get your money.

I never had stem cell.

i am saying to everyone It IS A SCAM AND THE DOCTORS ARE CON ARTISTS AND WUACKS.

I SAID QUACKS.

i have PHN since 2012.

i know what is legit and bull.

 

OK, misunderstood

From my pretty extensive googling around, I can only find a single scientific paper on actual research into stem-cell therapy and PHN.

Thus, anyone claiming to provide such a treatment should be shun like the devil at this time.

Go to www.ncbi.nlm.nih.gov , select "PMC" as the database and search for the PMC number 4020887  (main search bar on the top), there is one article about a very small study on trigeminal pain which seems to indicate a reduction in pain-scores for the tested patient-group.

Although promising, we are far away from any (as far as I know anyway) established treatment using stem cells for neuropathic pain in general, PHN in particular, thus....stay away from money-stealing quacks (because that's what they are, IMO these "doctors" should be prosecuted) until proper research has been posted on public accessible databases.

I really hope that there will be a push in the direction of stem-cell therapy, because when it comes to anything to do with brain and nerves, humans cannot yet provide any good treatments themselves, in fact, we are still having issues understanding how nerves and brain actually works.

I read a good article in Consumer Report that said doctors have caught onto the fact that many people are familiar with the term "stem cell" so they think that will solve their problem, whatever it is they're trying to sell you. There are still plenty of snake-oil salesmen trying to make a buck out of people's suffering. I always tell people do the least invasive process as possible. Any time you're opening up the body via needles or surgery, you're risking damage and long term problems.

I would try it to see. TENS has been around for a long time, and is non-invasive. However, there is an invasive form of it in which the electrodes are implanted in the spinal canal, near the spinal cord. I would avoid this at all costs. Have seen many people who did not find it helpful. 

I agree with Charlie to avoid anything that's invasive. those implanted stimulaters work for some, not others, but it is a surgical procedure, so if it doesn't help, you may create new problems. Sadly, PHN is very difficult to treat. They keep trying various methods to confuse or block nerves. Some help a bit, others not at all, so go with the least harmful, try multiple methods and see what works. I use gab (which I am tapering from and DO NOT RECOMMEND), Aspercreme with Lidocaine, a prescription NSAID for a previous joint problem and Tylenol. I also avoid actions that make it worse. Mine's in my chest and back, started in October 2016 and have probably 80% less pain now. The healing may be almost imperceptible, but track those, to see there IS improvement. Even if it's "oh, that used to hurt more two months ago, or I can do this with less pain or I haven't had XYZ type of pain for months, I forgot that!"

Distraction, CBT (cognitive behavior therapy), light exercise or activity that doesn't increase your pain are all good assists. Some use special diets, supplements, other methods such as cannibis or CBD oil (I don't recommend this either). It's a long haul, but improvement is possible and likely, just not on the schedule WE want.