What are the medications you use to control your pain?

I have a doctors appointment on the 23rd to discuss treatment options. I can't sleep, can barely work and I'm completely miserable. What medications work for you?

ALSO

Are there any shots or blocks that you use to control SFN/LFN of an idiopathic source?

I just need to find some sort of relief, I can't do it anymore, I am so miserable and I barely have the inclination to get myself out of bed, besides that I am going back to school in Jan. for the spring semester (i'm 22) for my BA in Nursing and I will not be able to finish like I am now!

Thanks Guys,
I am SO happy to have a place that everyone understands, understanding is VERY hard to come by these days!~

Joshua - I recommend you start with Lyrica - this is made specifically for PN and many get excellent results. Weight gain is a side effect so one has to weigh this side effect against the pain loss. If your hurting bad enough then a weight gain might be worth the price.

Many PNers are still using Neurontin along with an additional med or meds which is known as a 'cocktail'. It works for many. The problem with PN is that what works for one may not work for another. It's a continuing battle.

If your pain is constant and truly bad (no exaggerations) then a opioid is probably the answer. A couple of good ones are Methadone and the Duragesic Patch. Docs are sometimes reluctant in prescribing opioids so if your doc won't then find one that will.

I've had PN for 21 years and for the first 15 years my life was absolutely miserable with pain levels at the 7 to 9+ levels on the Mankoski Pain scale - see: http://members.upnaway.com/~poliowa/Pain%20Scale.html My pain, which untreated is still moderate to severe, constant and chronic in my lower legs and feet. I started the Duragesic Patch system on 1-9-02 and after slowly titrating the dosage up to the 100 strength patch, I found excellent results that lowered my pain to a 2 - 4 on the scale. Presently I am using 125strength patches (1-100 strength and 1-25 strength) and I consider my pain well controlled at that 2 to 4 level. I have learned to almost ignore the reduced pain and I get along just fine. I'm able to do most anything a 78 year old can do including driving my car without incident. So, for me, the patches have worked wonders and I plan to continue their use until a cure is found or till I die. These patches don't work for everyone but they are certainly worth a try when everything else fails.

Good luck and I hope you find this info helpful.

[QUOTE=JoshuaY46012;589333]What are the medications you use to control your pain?

What medications work for you?

[U]Prescribed meds:[U]

*** I started out on neurontin 18 months ago. It was moderately helpful (meaning it gave me a 2 point pain reduction during the day). I was switched to nortryptiline (probably not the correct spelling). After completing the switch (a couple of weeks) I thought it was as helpful as neurontin, but then I began having panic attacks (which is not listed on the FDA-approved printout I received, but is listed on other side effects listings and, apparently, on the manufacturer's web site). Bad, bad, bad.

*** I finally was switched to Lyrica. Yikes! Do you know how expensive that is? I hope you have insurance because my monthly cost for it without insurance would be $450.00 (I take 300 mg a day). I think it also gives me about a 2 point reduction during the day.

*** My problems start around 4 or 5 p.m. Sometimes it is just a little bump and I don't need anything other than some medical marijuana (see the thread I'll be writing later today about that experience). I'll just say here that 90% of the time medical marijuana takes the pain down 2 or 3 points with about a 90 minute effectiveness duration.

*** At night I take Tylenol PM (2 or 3 tabs). If pain is higher I might take Vicodin (3 tablets). I kind of have to judge things starting at 8 p.m. because Vicodin takes 45 - 60 minutes to have an effect (and 25% of the time it has little effect). If I am taking vicodin I don't usually do the Tylenol (I don't want to go to high on the APAP daily limits, which I under stand equals 8 Tylenols. Each vicodin has the equivalent of 1 Tylenol, so if I did both, I'b be too close to that daily limit of 8. If I take vicodin later in the evening, I will take an Ambien to help with sleep (because vicodin acts as a stimulent with me -- go figure).


Non-prescribed:


***Medical marijuana (see my other thread)

*** soaking in hot water with a cup of epsom salts

*** A good session of aqua-aerobics (I'll hobble out on the pool deck, each step painful; after the session my pain has dropped 2 or 3 points; sometimes long enough for me to get to sleep before it wears off).

*** Stretches and relaxation activities.

*** Spa Pedicure. Yes! A great 45 - 60 minutes: soak in hot water, get your nails attended-to and then a foot and lower leg massage. I'd do it every day if I could afford it.


Conclusion


Like others, I've learned to live with pain at the 2-3 level. I call that a great day. But when it starts creeping up, I have to pick and choose and sometimes don't get the right combination, times when I end up in a close-to-fetal position in bed with my feet madly massaging each other (do other of you do that?) and finally fall asleep.

One thing I did that was very helpful was take the pain management class offered by my provider (Kaiser). 16 hours of really good material and some group support from the other class members (which is really important because sometimes I feel so isolated when I'm with others who don't have to deal with pain).

Chin up. We have good days, we have bad days. But we can do things and learn from each other. Keep coming back.

Cowboy

I'm new here, but I got relief from Neurontin within a week. The first four or five days on it were hell, because I was dizzy and nauseated all the time, but I seem to have gotten past that now, even to the point where I can quit using my methadone again. (I have been on that for years as needed for cervical pain.)

As far as narcotics, if you need them, I can recommend the methadone. When I need it, I am on 10 mg BID. Don't notice any side effects - and being able to take it only twice daily is a benefit to me.

Pain is down to around 2 - and that's mostly "buzzing" in the feet.

Good luck to you.

Have you considered that Ambien may be a pain generator? I would do a search on it. As a nurse, be aware of drugs and iatrogenic conditions.

I don't use Ambien and from what I've read on this forum I don't think I'm going to!

I do use Neurontin and Ultram Neither which control my pain to a level that I can handle. Some days the Ultram works better than others and the Neurontin I can't tell any difference at all!

I did take Lyrica which put a small dent in the pain but insurance wouldn't pay for it and I didn't have 300 dollars a month for the prescription!

Joshua, I just looked at your age. I am concerned that you are so young. Have they really worked you up thoroughly? Do you have any history of SFN in your family?

As a nurse myself, I can say that it is really hard to work in that profession with a chronic pain issue. Since you are still in school, you may want to look at a change in your major. All of us old nurses have a ton of physical problems. If I had it to do again, .......

(Yes, I am aware of the job market....)

You will be subject to drug tests by most employers, so consider that in your decisions as to what to use for pain.

I just came off a fentanyl patch and clonazepam and it was a really difficult physically. I have done this several times, and have come to the conclusion that the meds don't help me.

I wish you luck in your search for pain relief, and also in your search for a cause of your PN. They tell you it is idiopathic really fast sometimes, way, way before they have done a lot of other tests. Also, have you had an autonomic work up? If not, I would consider that. Also, one thing I did, was do a huge genealogy.....finding out what is hiding in the genes...especially given you are so young.

I have been tested for everything under the sun, I've been suffering more and more everyday for a bit more than a year. I can't stand to be in pain any longer, especially if there is something, anything that could help keep my pain to a manageable level. Believe me, I'm exploring every option of figuring the cause of my SFN but until that day I need help. My neuro has tested me for most of the "fixable" causes and I think he's pretty sure my case is idiopathic. BUT you can never be too sure


I'm very focused with schooling and I want to continue in nursing. I have thought of it several times and how difficult it can be but I wont let this pain ruin my entire life and I wont let it stop me from doing something I really want to do. I wont let this pain control me if I have a choice.

I would never use ANY medication that isn't prescribed for me nor would I use recreational drugs so I don't think drug testing is a worry for me as it isn't illegal to test positive for a therapeutic dose of a prescribed medications.

I really appreciate your reply, it's so VERY important to have others that understand the situations we all encounter with PN and Chronic Pain. Thank you so much!

Josh

--"you've been tested for everything under the sun", do you have copies of the results of all those tests, and can you share them with us?

Forgive my skepticism, but when people say that, we often find that what they've been tested for is what their doctors can think of, which is often not as extensive as it can be.

That's part of the reason Liza Jane created her neuro testing spreadsheets (with input from many others here) to help people track test results over time, and to suggest tests that docs don't always think of. It's the most comprehensive list of possibilites I know:

www.lizajane.org

Far too many of us have been through what has been termed "comprehensive" testing only to find out it really wasn't that comprehenisve. Of course, we do recognize that there may be time and monetary/insurance considerations in attempting to gothrough even a subset of what's on the spreadsheets, but the fact remains that finding a neuropathy cause is often a long, arduous process of elimination.

I do have copies of all my labs! I always make sure to get a copy of all of my labs and tests/scans!

I'll post them here in a bit as I'm in a hurry. I've had B Vits checked, ANA, Protiens , Rhem Factor, Complete Blood Count, Fasting Glucose, SED Rate, A Blood Panel (Potassium, Iron, Zinc, Uric Acid. etc) TSH, Folate, Immunofixation Urine and Serum, C-Reactive, Infectious Diseases. No Spinal Stenosis or any cause in the spine, muscles normal, depleted reflexes in hands and feet and so on it's a long list