[debbiehub]

Hi all. I have not written for a while. I went thru with IVIG for 5 months and it did nothing for me. I did test positive for small fiber neuropathy in my left leg (RSD started in left foot) and it spreading fast. I am having muslce atrophy in my left leg, butt, arms and back. It is horrible. I feel like the Dystophy has hit me hard. My question is what do u take for the nerve pain. Lyrica cymbalta and lamictal all gave me bad stomach aches. Any suggestions as I waste away.
I am going swimming about 4x a week so I am trying to slow down the muscle wasting but its not working.

Thanks
Debbie

[Russell]

Debbie,
I'm so sorry for you.
I know that when I first started taking Lyrica it was with food in order to keep from getting an upset stomach. Now I'm used to it.
Did you try taking it with food? Lyrica really didn't work well until I reached maximum dosage. I myself am going to my neurologist later because it no longer helps with my flare ups which are getting stronger...

[alt1268]

debbie,
sorry to here your going through a rough time. neurontin is one of the big one's for nerve pain.

[LIT LOVE]

Some of my stomach issues with meds in the past were corrected with a prescription strength antacid. There were periods the only thing I seemed to tolerate was dairy to coat my stomach before ingesting my meds.

I've found that since I've cut out processed foods and carbs, (using a variation of the 4 F's diet) I no longer have stomach pain or sensitivity. I haven't needed to use antacid in months.

Cymbalta worked really well for me for a few months and then caused severe stomach pain. I should probably do another test to see if I can tolerate it now.

[kathy d]

Hi Debbie,
Glad to hear from you. Dr. S wanted me to do the IVIG in May and I did some research on it and the stats for helping were only about 30% which I felt for inpatient etc was too much for me to go through esp after my horrible experience falling in ICU during ketamine procedure.

Chiropractics (very gently) and I have been getting iv's of natural vitamins and trace minerals for the past year due to my fall in icu. It was the only thing that helped me. I went once every two weeks and now go once a month. What a huge difference. You may want to try that as my ins has paid for it after what I went through. I was in the ER every week dehydrated and in agony from the fall. I was able after five months of opioids (and five years + of fentanyl use) to get off all opioids. I take 1/2 muscle relaxer (Soma) now and hope to get off that too. I had a hard time sleeping before (actually didn't sleep for over 3 weeks last year after fall) and now sleep 6-8 hours each night!!! A miracle for me. 1/2 Soma and 1 3mg of Melatonin get me to sleep now. Only other thing I take is an anti-depressant to help with pain and I hope to be off that soon. I am finding a more natural approach is what works for my body now...of course after severe dental problems. My body could no longer handle and pain meds. Now even when I take a vitamin my burning pain increases so that is why I am getting off it all. Yes, I have pain each day but I had the same amount of pain and more while taking the meds...they were slowly killing me.

I am sorry the IVIG did not work for you. How long did you do it for? Well at least you can say you tried it and now you need to look for something else that works for you. Oh I have taken all the meds for rsd and none worked and made me deathly ill where I could not move off the bed so meds just don't cut it for me. Best of luck.
kathy d

[Dr. Smith]

Originally Posted by alt1268

neurontin is one of the big one's for nerve pain.

Agree. Nerontin (gabapentin), Lyrica (pregabalin), and Topamax (topiramate) are proabably the big 3.

Diet can have a greater effect than one might think (though everyone is different) both in foods to eat and foods to avoid.

Google: foods nerve pain
Google: foods inflammation
Google: foods neurogenesis

Doc

[alt1268]

I agree with Dr. Smith, diet plays an important roll. I know when I eat good and stay away from the fats, I feel much better.

Originally Posted by Dr. Smith

Agree. Nerontin (gabapentin), Lyrica (pregabalin), and Topamax (topiramate) are proabably the big 3.

Diet can have a greater effect than one might think (though everyone is different) both in foods to eat and foods to avoid.

Google: foods nerve pain
Google: foods inflammation
Google: foods neurogenesis

Doc

[LIT LOVE]

Originally Posted by alt1268

I agree with Dr. Smith, diet plays an important roll. I know when I eat good and stay away from the fats, I feel much better.

All fats are not created equal! As a nation we've gotten much Fatter since the low fat craze hit. "Low Fat" and "Non Fat" often mean highly processed. I use EVOO, virgin coconut oil, nut and sesame oils, and BUTTER.

Alt--I know you possibly meant something entirely different with your comment. I'm just a huge convert to both Hooshmand's 4 F's diet and the Paleo eating movement (Primal Blueprint inparticular) and encourage everyone to try it for at least a month. It's common to go through withdrawals for a few weeks--and that in itself is so telling. Our bodies are bombarded with chemicals and hormones if we eat "normally", not to mention the complex issues with regards to blood sugar.

I ate a Reese's PB cup at Haloween and it seriously felt like I had the flu! Never again...

End rant...

[Dubious]

Originally Posted by LIT LOVE

All fats are not created equal! As a nation we've gotten much Fatter since the low fat craze hit. "Low Fat" and "Non Fat" often mean highly processed. I use EVOO, virgin coconut oil, nut and sesame oils, and BUTTER.

Alt--I know you possibly meant something entirely different with your comment. I'm just a huge convert to both Hooshmand's 4 F's diet and the Paleo eating movement (Primal Blueprint inparticular) and encourage everyone to try it for at least a month. It's common to go through withdrawals for a few weeks--and that in itself is so telling. Our bodies are bombarded with chemicals and hormones if we eat "normally", not to mention the complex issues with regards to blood sugar.

I ate a Reese's PB cup at Haloween and it seriously felt like I had the flu! Never again...

End rant...

I just feel so guilty saying this; especially since I know all about throwing a wrench in the inflammatory (prostaglandin) cascade through diet...but I just gotta tell ya the peanut butter cup I stole from my daughter's candy bag/stash from Halloween was just heaven! Okay...there, I came clean!

[LIT LOVE]

Originally Posted by Dubious

I just feel so guilty saying this; especially since I know all about throwing a wrench in the inflammatory (prostaglandin) cascade through diet...but I just gotta tell ya the peanut butter cup I stole from my daughter's candy bag/stash from Halloween was just heaven! Okay...there, I came clean!

They were my all time favorite junk chocolate... I still eat small amounts of super dark quality chocolate, and I don't notice an increase in swelling or pain or any other issues. 1 stupid PB cup and I was miserable all night--even after trying to eat to correct my blood sugar. I felt nauseous, and had zero energy! I would suspect I'm diabetic, but I've had my blood sugar tested a bunch of times.

No food is worth the improvements in my quality of life I've experienced since changing the way I eat--and I love food. If you think of food that triggers your RSD as a poison, or even treat it with respect like a drug, (which is how my body reacts to it) it'll forever change your relationship with it. I'm sure the meds I'm on play a role as well, btw.

I did say I was done ranting, didn't I?