Pain after Shingles

M

Mee M

New member
I had shingles in August of 2008. I have been suffering with PHN since they cleared up. The Dr had me on Lyrica. At first 150mg x 3 a day. I am now on 50mg am and pm. Still have the pain in two spots. I gained much unwanted weight. I am now trying to get off the Lyrica with drs approval. I am on 1 50 mg a day. Anyone have a suggestion what I can take? The dr. told me if after I wean myself off, taking a week to do so and was still in pain he could find another drug. As I need to work it can't be one that makes me a zombie.
I am looking for help here!
 
Ask your Doctor about Lidoderm pactches - its Lidocaine in a sticky patch (and they can be cut to size even for use in smaller areas) that can really help with post herpetic neuralgia. If you have access to a compounding pharmacy (there are always mail order ones if you don't have a local one) ask your Doctor about a neuropathic pain cream - I have one specially made, by prescription, for Trigeminal Neuralgia pain on my face. Mine contains Tegretol, Lidocaine and Ketamine, but I have heard of Gabapentin being used (somewhat similar drug to Lyrica/Pregabalin) as the amount used topically to help the pain is much, much less than the oral dose. Beleive me, when they finally develop a medication that treats nerve pain and does not make you goofy, there will be a stampede at the pharmacy for it - it is one of the most frustrating side effects of meds that help nerve pain. Good luck with your pain and getting some relief for it.:wave:
 
Have you tried wearing a tight fitting garment like a body(i.e. gymnasts costume )to stop irritation from shirts etc? It seems to be the only way I can live with this problem which has been with me for two and a half years or more. I would be interested in your response. A 76 year old sufferer!!
 
hey tigger, just what insane side effects did YOU experience with lyrica besides that weight gain? what shocked me was i too actually gained weight, which if you knew how screwed up my body is from SCI which also damaged my sympathetic nervous system and left it in the 'fight or flight" mode which has been canabolizing all my fat stores? i simply cannot take in more claories in a day than my body burns up with doing almost nothing. the metabolism just amps up to an extremely high degree and actually goes into all fat stores which makes it impossible for me to gain or even try to maintain weight at all really. but lyrica caused ME to actually get up to 124lbs,which was from about 95lbs at that time. just insane really,so i can only imagine how bad that gain must be for more 'normal" people? that was nuts.

but i also ended up with a really insane type of up and down double vision, not the normal side to side? i kept veering off to the left everytime i actually tried to walk straight down the middle of my hallway? this was even trying baby steps too, just kept veering off. my already unpredictable leg crap became VERY much more unstable and unpredictable too. i would not drive or even attempt to try going down any stairs in my house either. caused alot of leg achiness too. but also VERY extremely vivid types of nightmares? it was also horrid with that brain fog crap as well. it also affected and swelled up my already PKD enlarged kidneys. i am just wondering what you experienced with this crap? i will not ever try any NEW meds anymore. i am sick of just being a guinea pig for drug co's who just do not trial this crap enough before hitting the wider population where you REALLY start seeing the side effects. hope your experience was not too over the top nasty. FB
 
You don't say precisely where the shingles pain is, but mine is on the waist from spine to the right side of my body. The only thing at present which keeps me sane is wearing a gymnasts costume under my shirt which smooths out the area where the trouble is and prevents the skin from being irritated by rubbing against shirts etc. The downside is that your body heat rises rapidly and you need to change the costume regularly. Otherwise I too am searching for answers!!
 
i was going to mention the very same thing, lido patches. depending upon just where you actually have the pain right now, the patches can work wonders. there is also another ointment that IS the same as the lido patch with them both containing the 5% lido? its just lido ointment 5%. this is more for areas where a patch cannot really be worn? i use the lidos in both forms for many different areas of pain from pain syndromes that developed from spinal cord injury. this crap just never ever stops its burn sting nightmare, ever. the patches also help me with what is a neuopathic itch i developed kind of under my left shoulder blade too. just amazing what these patches can relieve at times.

i too tried lyrica(among many other meds) and had a horrid reaction to it. it was actually helping for the first time in many years with this nasty stuff, thats why it just sucked so bad to have to go off it. trying mostly topicals really helps to cut down on just having to take any or the anti convulsant types of meds at all if you can hit the right places. no side effects either. i would be sooo lost and in a heck of alot more pain if i did not have my lidos. i seriously would give the suggestions a try. sometimes hitting pain from the outside really really works so much better than trying the crappy meds on the inside and all that can be created too. just where are your pain areas? good luck and please let us know how you are doing, FB
 
If at all possible try the lidoderm patches or the cream if it's an akward spot to keep a patch on. They do wonders. I first used them after shingles. I found the information on the web and took it to my Dr. at the time. He was giving me vicodin which was OK - that was years before I was a chronic pain paitient. He was fine with prescribing the lidoderm. In the years between I have asked more than one Dr. for them. Generally they are very willing to allow you to try them especially for PHN since that is what they were designed for. I was given lyrica for another supposed nerve problem and had horrible neurological side effects, and gained 20 lbs. Not a happy camper. There are a lot of options out there for oral meds. There are other meds in the same class as lyrica, and any number of anti-depressants that can be tried, as well as outright pain medications. Many, many people do very well on these and there are many different ones available, if one does not work another may.

Hope you find something that works for you.

Tigg.
 
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