[Nanc]

This morning I was awaken by this pain, like a lightening bolt shocking pain. I have one SCS battery still in my left butt/hip area (the other was moved to the right front/side), and this pain was right in that back battery area. It calmed down later today and then started back up again. I am wondering if this is coming from the battery or just RSD pain. I do have RSD in that same leg, but this pain was different than what I normally experience in my leg.

I haven't turned either my cervical or thoracic stims on in a while. Need a revision on the thoracic one and that battery (in the front) is twisted. When either or both stims are on, I get pain in my lower back...between my thoracic incision and the cervical battery that is still back there. I am still up in the air about whether to have the revision or get it all removed

Anyone else experience this kind of pain around the battery site??
Thanks,
Nanc

[zookester]

Hello Nanc,

So sorry you have this new pain on top of the other issues!!

I don't experience this from my battery site but, have had those horrendous lightning bolt or live wire arcing in from my groin to my ankle since I initially woke up in recovery after the surgery that caused the nerve damage and CRPS II. I do hope this was a random thing for you and won't turn into a new pain battle. Out of all the symptoms I personally experience from CRPS this particular pain is the worst to deal with. I was actually discussing this type of pain the other day with my Nuerologist and even he admitted that it is one that the SCS doesn't have a lot of success at masking. Sure wish I could share something with you that helps but, as of yet nothing seems to slow them or reduce there intensity. Of all the pain- it is the only one that will bring about a verbal "ouch..crap..crap craaaaap" when it occurs and I dread when many come in succession.

Again, my heart goes out to you I wouldn't wish this pain on anyone!!
Tessa

[Nanc]

Originally Posted by zookester

Hello Nanc,

So sorry you have this new pain on top of the other issues!!

I don't experience this from my battery site but, have had those horrendous lightning bolt or live wire arcing in from my groin to my ankle since I initially woke up in recovery after the surgery that caused the nerve damage and CRPS II. I do hope this was a random thing for you and won't turn into a new pain battle. Out of all the symptoms I personally experience from CRPS this particular pain is the worst to deal with. I was actually discussing this type of pain the other day with my Nuerologist and even he admitted that it is one that the SCS doesn't have a lot of success at masking. Sure wish I could share something with you that helps but, as of yet nothing seems to slow them or reduce there intensity. Of all the pain- it is the only one that will bring about a verbal "ouch..crap..crap craaaaap" when it occurs and I dread when many come in succession.

Again, my heart goes out to you I wouldn't wish this pain on anyone!!
Tessa

Thanks for your reply Tessa! I agree with you, this type of pain is worse than the everyday RSD/CRPS pain. It actually causes me to jump because it is so sharp and shocking and I say things that I cannot post here . I do get similar pains in my head too. I just don't know anymore...I am so frustrated!

[zookester]

Nanc,

haha.. I totally understand "saying things you cannot post here" my friends jokingly call it my CRPS tourettes. And the jumping.. it absolutely does that to me as well.

It is very frustrating sure wish there were easy answers. One thing I did realize after my initial reply was that keeping my body warm does lessen the frequency a little as well as doing my best to reduce other things that cause my senses to be heightened. Noisy environments, a slight chill, harsh lighting, and emotions generally seem to make these random shocks more frequent and in a bigger area. For me the SCS is paramount in my ability to cope with these electrical shocks, because just reducing (even a little) the other pains makes coping with these more bearable.

If you don't already do this keeping a journal may help you determine triggers as well as help you create your own coping protocol when these occur. For me, I have found that constant switching things up before my body has a chance to become numb to the positive effects is the most helpful. CRPS seems to fail when treatment is consistent at least for me.. so my days are filled with trying to "trick my brain" and staying away from patterns.

Like you, I also get them randomly in other places. However they are less frequent there and relentless in my right leg (from groin to thigh) where the nerves were damaged. Do you have CRPS II?

My NS said that the Gabapentin is supposed to help but, I have not personally noticed it to benefit for that specific type of pain. We are changing dosage patterns to see if that helps.. I'll let you know. Are you on it?

Hang in there Nanc and if you ever need to vent.. I am here for you!
Tessa

[Nanc]

Tessa - that is so funny! I tell my husband that I get a little case of Tourette's when I start cursing like crazy with the lightening bolt pains!!

These pains yesterday morning hit when I was in bed. The weird thing is that all night, for the past several nights, I had been kicking the covers off, putting them back on, and back and forth all night. My husband said I was burning up. I know when I get cold, everything is worse. I stopped working at the end of Dec, temp is one thing that irritated me so bad at the office...it was never comfortable! The weather here has been crappy lately, overcast and rainy, yuk! It takes a toll on me too I haven't been good about keeping a journal, thanks for the suggestion/reminder as it is a great idea!

I really don't know if I have type I or II. I was diagnosed with RSD over 22 years ago and that is the term my doctors now use and I still use. My medical records say RSD and they say CRPS. Not sure if I have nerve injury that caused it or not (it was a long time ago), I know I do have nerve damage in some areas. I had several injuries that caused spread and I had a venipuncture injury...tried donating blood years ago and the needle went straight thru the vein, dr said it hit a nerve.

I have tried so many meds. I have so many allergies, to food and meds, I can't take anything that is in capsule form allergic to gelatin/pork. So that limits so e treatment options. I have tried gabapentin (neurontin) and had horrible reactions to it. I hope your new dosages help you, do keep me posted!

Thanks for listening to me, been having an exceptionally tough time these past several weeks.

Nanc

[zookester]

lol.. Nanc we have much in common!

I am also allergic to the gelatin/pork used for so many gel type capsules - just another added challenge to this whole thing!! How about specially formulated compounding cream? I use it 4xper day and even though it is grueling to rub it in - it does offer enough relief to warrant its continued use. I actually just got a new bottle with a higher amount of the ingredients so I am hoping it helps just a bit more. Looking at the label it along with Ketamin, Baclofen (sp?) etc., it also contains Gabapentin maybe that would be something worth trying if you haven't already.

Yes, those lightning bolts do get much worse at night and from what my doctors have stated that is indicative of nerve injury since it is a hallmark sign of neurogenic pain. Epsom salt soaks in the evening & a glass of wine (if you partake) may also help for the night time pain.

Have you tried following Dr. Hooshmands "four F's" diet? I've been following it for 3 months now and it does seem to be of some benefit. Maybe not so much pain wise but, I do feel more nutritionally balanced and haven't had any issues with stomach problems since following it. The only thing I cheat on is Coffee.. just can't let that go just yet. With the little sleep we all get from CRPS pain, Coffee is the only thing keeping me awake much of the time.

Another thing worth checking is your B12 levels. I have been using the liquid B12 now for a few days while waiting for my appt. to get this checked. It certainly can't harm you and there is no worry about overdosing and as a bonus it often gives a little boost of energy/mood.

I'll listen anytime... we all need each other!!

Hoping and praying the coming days will be better.
Tessa

[Nanc]

Originally Posted by zookester

lol.. Nanc we have much in common!

I am also allergic to the gelatin/pork used for so many gel type capsules - just another added challenge to this whole thing!! How about specially formulated compounding cream? I use it 4xper day and even though it is grueling to rub it in - it does offer enough relief to warrant its continued use. I actually just got a new bottle with a higher amount of the ingredients so I am hoping it helps just a bit more. Looking at the label it along with Ketamin, Baclofen (sp?) etc., it also contains Gabapentin maybe that would be something worth trying if you haven't already.

Yes, those lightning bolts do get much worse at night and from what my doctors have stated that is indicative of nerve injury since it is a hallmark sign of neurogenic pain. Epsom salt soaks in the evening & a glass of wine (if you partake) may also help for the night time pain.

Have you tried following Dr. Hooshmands "four F's" diet? I've been following it for 3 months now and it does seem to be of some benefit. Maybe not so much pain wise but, I do feel more nutritionally balanced and haven't had any issues with stomach problems since following it. The only thing I cheat on is Coffee.. just can't let that go just yet. With the little sleep we all get from CRPS pain, Coffee is the only thing keeping me awake much of the time.

Another thing worth checking is your B12 levels. I have been using the liquid B12 now for a few days while waiting for my appt. to get this checked. It certainly can't harm you and there is no worry about overdosing and as a bonus it often gives a little boost of energy/mood.

I'll listen anytime... we all need each other!!

Hoping and praying the coming days will be better.
Tessa

Hey Tessa, I am gonna send you a private message! Thanks again, Nanc

[Rrae]

You two are giving each other such great feedback, what can I add? I keep you both in my prayers always and I try to hang on to the hope that something will finally break thru for us all.

What in the world could be causing these lightning bolts!
I think we should adopt Messy Mark's agenda and gear up for major BATTLE MODE . We'll also add the 'Tourettes', as this will be a great intimidation tactic.

Really tho, this is no joking matter and I'm so sorry for what you've been going through. I don't understand how pain can constantly change forms and migrate around the body.
Enuf is Enuf I say.

Caring Always,
Rae