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Still on this winding road and struggling! Still on this winding road and struggling!

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  #1  
Unread 02-24-2006, 09:43 AM
Still on this winding road and struggling!

I haven't posted much lately, but unfortunately it isn't because I've found the off ramp....or even a side street for that matter.

As many of you know, I have been out of work due to health problems for quite some time and have state medical assistance and have to go by all their crazy rules. I recently moved back to where my older kids and grandbaby live and SO, have to change PCP's again. Of course, I really liked the one I had, but have lost the fight with Medicaid to keep her because she is 45 mins. away. So here I am, my BP is not under control, I think I have another kidney infection, my pelvic/back/leg pain is getting worse. (I very much think I've got nerve pain that is unrelenting.) And I've got to start all over with a new PCP....who I can't get an appointment with until April. It's insane!!!

I've had bad experiences with 2 of the 4 docs here so am trying #3. Her office said she is willing to work along side my PM doc, but that is what they all say until I get there and they get their own ideas of how to "fix" me. I'm not giving her up though (PM doc) as she has been my only saving grace in the last 2 years! I have an appointment for SI injections on March 10th which I know will provide at least a little short term relief. Sigh! I am just so tired and frustrated!!

Anyone dealing with what they think is nerve pain that isn't relieved by narcotics?? What have you tried that has helped?? I am on Cymbalta...but really only noticed a difference in my sleep patterns with it...not pain level. I don't want more/stronger narcotics...they don't help!!! What to do????????????????? I welcome any advice!
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  #2  
Unread 02-24-2006, 08:02 PM
Still on this winding road and struggling!

Hi there! I have gotten some relief with a newer nerve pain medication called Lyrica. I know that others on this board have used it as well, some with really good results. I also have nerve pain in my back, abdomen and legs. You might ask your doc about it. Best of luck to you!
  #3  
Unread 02-25-2006, 05:28 PM
Still on this winding road and struggling!

I know this sounds too simple and "health nutty" but I swear it's helped more than anything: plain old cod liver oil! I remember reading a medical abstract on how the test for cod liver oil on RA patients had just blown all the researchers away because 87% of the patients showed an improvement in their BLOODWORK (amazing) within 3 weeks and nearly all (I think it was something like 98.7% but can't remember for sure) of the patients reported feeling better.

After reading that, I thought, "What the heck..." and gave it a try. Amazingly, I feel so much better! It works by reducing inflammation. In my case, it not only helped the RA, lupus and fibro symptoms, but most importantly, it reduced the inflammation involved with my pudendal nerve damage. Mind you, this is not a cure, but I can honestly say it works better for me than all those expensive, pharmaceutical prescriptions do.

Good luck-
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  #4  
Unread 02-26-2006, 01:07 PM
Still on this winding road and struggling!

Haven't tried Lyrica or anything of that sort as my EMG showed no nerve damage (at least for the nerves tested). Last PCP went with Cymbalta on a whim. I'll have to ask questions at next appointment. What kind of side effects does it have??

How do you use the cod liver oil? I'm willing to try anything at this point!
  #5  
Unread 03-25-2006, 09:01 AM
Still on this winding road and struggling!

Lucille, I am wondering how much cod liver oil you take and how long it took after you started it that you noticed a difference. Any unpleasant side effects?
  #6  
Unread 03-25-2006, 09:35 PM
Still on this winding road and struggling!

I thought I was the "queen" of nerve pain!! I kow for sure that I have pudendal nerve entrapment. Then, I also have nerupathy ALL over-including legs, feet & torso. I primarily take Neurontin up to 2400mgs/day. I was on Cymbalta for a year--kept waiting for pain relief. One neurologist wanted me to double the dose and another said to quit it totally. I have read about problems with Cymbalta...it's on the closely watched list. I tried Lyrica and had a "meltdown"...kind of like hormones going crazy. I have found that sitting on a custom designed cushion, taking a herb called "Alpha Lipoic Acid"...it regenerates nerve endings and massaging my abdomen with lotion helps a LOT. I have recently started taking cod liver oil capsules and Vitamin B12 (sublingual) and my energy has increased greatly!! I use a great online herb and vitamin company. PM if you want more details.
  #7  
Unread 03-27-2006, 12:09 AM
Still on this winding road and struggling!

Hi Ladies,

I take two Cod Liver Oil capsules every morning and that seems to do it for me, although I know most people take more. I've always been a very light weight and need the minimum dosages. For example, I take 1/4 of the lowest dose of Ambien. So you'll have to take your own metabolisms into consideration.

No, I don't have any unpleasant side effects from the cod liver oil, but I have learned that if it "repeats" on you, then it's probably old (rancid) and you should throw out the bottle and get fresh. Keep it in a cool dry place. Also, I usually eat my breakfast after I take the capsules and that probably helps with the "repeat" that some people experience.

Occasionally, I'll have a rougher day than usual and when that happens I take an extra one or two later in the day. Since taking the cod liver oil I've been able to wean myself off the Neurontin completely.

txfriend- with the pudendal nerve entrapment, have you discovered that if you sit on the toilet and lean over, forward, you can (hopefully) get some relief? I used to tell my other doctors this (before diagnosis by expert) and they all looked at me like I was nuts. Then when I found an online pudendal support group, I discovered that this little bit of information is used as a diagnostic indicator for the doctors in the know. Since you already use the special pillow (donut?) you have probably already discovered this, but I thought I'd pass it on, just in case.

Best to all,
  #8  
Unread 03-28-2006, 04:27 AM
Still on this winding road and struggling!

Lucille what is "repeats"?
  #9  
Unread 03-30-2006, 10:33 PM
Still on this winding road and struggling!

slt, - for me, kind of like a mini burp, . . . leaving an unpleasant taste or odor from the cod liver oil. That means it's rancid. When you buy cod liver oil, always check the expiration date and store properly. It should be kept out of the heat (don't leave in car when bringing home), kept out of sunny spots in your kitchen and replaced if it gets old. But don't worry, it's very inexpensive.
  #10  
Unread 03-31-2006, 09:55 AM
Still on this winding road and struggling!

I read the bottle for cod-liver oil and it said it's for the immune system...just curious how this is suppose to help nerve pain???
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