MERRY CHRISTMAS- HAPPY HOLIDAYS AND A BLESSED NEW YEAR EVERYONE.
Please keep posting.

Much love and graditude,
Stacey & Santino

I have numerous chronic illnesses (too many to really list for the purposes of this comment)… the first of which hit me at 13 years old.

Now I’m 40 years old with daily pain from multiple illnesses.

I will get specific on one of my issues (issues is far too mild a word for it)… One of the conditions I deal with daily (not officially diagnosed as RSD/CRPS or as anything really) I have began immediately following my 7th surgery.

Two nerves were cut during that surgery. The ONLY thing that has helped the pain in that leg improve at all is acupuncture. Since January 2008 I have had very severe problems there. (The lateral femoral nerve and genitofemoral nerve were cut after an inguinal hernia was ruled out in a 2004 surgery and after 2 nerve blocks).

After over 4 years of agonizing pain, I finally agreed to have 1 of those 2 nerves cut. (They ended up cutting two but we won’t go there). The pain was so bad the 4+ years leading into that 1/2008 surgery that I didn’t think it could get worse. I WAS WRONG ABOUT THAT!

In any event, the neurologists all agree that I have “permanent nerve damage”. When I am in public, I have to “guard” that leg because if anyone accidentally bumped into me or brushed lightly up against me in a crowd, I would crumple to the floor, writhing in pain.

I know this because once in a blue moon (despite their best efforts not to) my poor family members have accidentally touched my leg and that’s what happens (collapsing to the floor upon “impact” – akin to a feather stroking my leg – and me screaming in pain even when I try not to because I don’t want to scare my daughter by screaming) .

When I say that acupuncture is the only thing that has caused ANY improvement in that leg, I don’t mean to imply that that leg doesn’t hurt like hell all the time. It absolutely does.

The thing is that after my January 2008 surgery and before my 1st post surgery acupuncture appointment, I was basically housebound. Going outside on a winter day with the wind blowing against my leg the 1st time I tried going out caused me to fall down in my driveway. The air pressure/temperature were far too much for my leg to handle.

Apparently, I was having “phantom pain”, from what I learned from a variety of sources at the time. Indoors, I had other problems. At times, my leg felt like it was burning. By burning, I mean ON FIRE.

The stabbing pains I had then felt like someone was stabbing my thigh with an ice pick.

My leg still hurts like hell. I still have to sit in an odd position to accommodate that leg. If I get really daring and go to a concert, I have to get the aisle seat because that leg cannot have anyone/anything next to it (including my own family). That leg must be protected at all times. It is exquisitely sensitive and I really do have to guard it.

To this day, if a fuzz ball or piece of lint gets on my pants, I can’t just brush it off that leg with my hand like I used to. The pain which that amount of pressure would induce would be far too great. If that leg itches, I’m in real trouble because scratching it is out of the question. It still sometime hurts to have the lightest possible cloth on that leg. I must carefully pick only the lightest, most flexible material for pants. We won’t even talk about trying to shave that leg. I have tried about 3 times since January 2008. Instant tears. I have had to make peace with the fact that “it is what it is”.

Thanks to acupuncture, that leg no longer burns like it’s on fire. The frozen feeling I used to get on that leg is nothing like what used to happen. On a very cold day, I do get the sensation that my whole thigh is frozen/very cold but not as severely as in January 2008.

Since acupuncture for that leg, I also very rarely get the stabbing, take-your-breath-away type pains in that leg that I used to get.

So, thanks to acupuncture… I am not housebound (the ONLY time I left the house before acupuncture began making inroads was for doctor’s appointments), my leg does not burn like it’s on fire, my leg rarely feels frozen, and I don’t feel like I could pass out from the pain all the time like I did after the 1/08 surgery.

That does not mean it doesn’t still hurt. It hurts in all positions but especially sitting. It’s a constant pain that flares up and gets somewhat better again but it’s always severe and there has never been any hint of a remission.

While I’d love to believe it’s going to keep getting better, I know how vastly improved it is since 1/2008… I know how long it’s been about how it is now… and I’m realistic enough to know (based on what I feel more so than anything the neurologists or acupuncturist have told me) that this may be as good as it gets for this leg.

I think knowing how far to push oneself to stay as active and productive as possible – without causing self-harm, back-sliding in symptoms, or even permanent damage from overdoing – is one of the toughest questions there is for chronically ill patients.

There are no magic answers and each patient has to find his/her own balance based on trial & error on a case by case basis, experience (more generally), listening to health care professionals and fellow patients’ thoughts on what may help most, etc.

The only person in my body knowing how much pain I’m in is me. My doctors, friends, and family can try to imagine the pain level but I am the one who feels it.

I have learned how important it is to truly listen to my body’s signals. Sometimes, I am more successful than others!

The thing is, though, that after 27 years of chronic illness/chronic pain and many diagnoses where one illness feeds off another, I have learned that to ignore my body’s signals is to do so at my own peril.

Thanks for a great post!

Jeanne

My appointment yesterday did not pan out like I would have wished. My doctor was aware of Dr. Harbut’s Low-dose Ketmine infusion thearpy but he dose not use the method as a form of treatment. He did say he would check around to see if anyone in my area would consider it. We did agree that it seem to be the least invasive treament but the only option for me other than that is the implantable Medtronic Neurostimulator. Has anyone tried this device?

Happy Thanksgiving to all of you.

Trying to balance family life and work is very hard. Was able to work full time for about 8years then part time for 6years and now I haven’t been able to work the last 2 years. Which has been so frustrating and depressing at times when you love work and enjoy your life like we all do.

The last 2years I have been in and out of bed as walking has been so hard for me. This awful tiredness and pain I have just knocks me and I hate the thought of having to stay in bed. But wait for it I do have my good days. Lol!!!

I live on a very strong dose of morphine now which I hate but it’s a matter of having to. I pray to the good Lord that one day I’m able to come off it. Where I live it’s not known that well and people just don’t understand what this dreaded disease does to you. It took me a while to understand it.

I do know about the Ketamine treatments and the doctors here won’t do it as it cost alot of money. But on to some good news at the moment I’m having a treatment which is called Primal Reflex Release Technique (PRRT) which is to do with the brain. Now this sounds strange and it’s a slow progress but it is helping me.

It’s hard to explain it but here goes, my doctor tries to connect to the brain by talking to me about different things and release the energy from the brain that is blocking the nervous system. By now you are all thinking this is really strange and I agree but it is helping me. I’m sleeping better my pain levels are good that awful foggy feeling in your head has gone and over all I’m feeling brighter. Thank the Lord!!! Yippee!!!

As I said it’s a progress that will take time but I’m hanging in there. Anyone out there reading this and I hope someone is hang in there be positive as I know how hard that can be but this is working for me. Thank you all for listening to me and reading my comment. If anyone out there would like to email me at anytime please do as I would love to hear from you.

There is no other person that I know in my country New Zealand that has this and it would be nice to talk to someone else that really understands what we are all going through. Thanks again and keep your chins up.
Take care.

Love Debbie.
Hugs and Kisses.