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Medications You Use To Control Your Pain
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.:hug: |
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.
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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. |
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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 |
When you say--
--"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. |
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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 |
just a quick share...
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Folate RBC - 498 Hematocrit - 43.2 Immunoselect Serum : IFF Serum - 928 IGM-Serum - 108 IGA Serum - 323 Total Protein - 7.10 Albumin - 4.28 Alpah-1 - .30 Alpha-2 - .82 BETA - .79 Gamma - .92 Sodium - 139 Potassium Serum - 3.6 Chloride serum - 100 Carbon Dioxide - 24 Blucose (fasting 24 hour) - 74 Urea Nitrogen - 10 Bilirubin Total - 1.8 (have gilberts disease) Calcium - 9.6 AST - 22 ALT - 22 Alkaline Phostp. - 63 Total Protein - 7.3 Albumin - 4.9 Globulin - 2.4 Iron Serum - 70 Uric Acid Serum- 6.7 Creatinine - .8 TSH - 3.73 Westergren Sed -3 ANA W/Titer - Negative Rheumatoid Factor - 7 CBC (w.differential) WBC - 5.5 RBC - 5.35 Hemoglobin - 15.8 Hematocrit - 45.7 Mean Corpuscular Volume - 85.4 Mean Corpuscular HGB - 29.5 W/Concentrn - 34.6 Red Cell Distribution Width - 12.1 Mean Platelet Volume - 10.3 Platelet Count - 207 Neutrophils - 49.7 Neutrophil Absolute -2.75 Lymphocytes - 32.4 Lymphocyte Absolute - 1.79 Monocytes - 14.3 Monocyte Absolute - .79 Eosinophils - 3.4 Eosinophil Absolute - .19 Basophils - .2 Basophils Absolute - .01 Lipid Panel Total Cholesterol - 164 Trigycerides - 75 HDL - 57 LDL - 92 VLDL - 15 Cholesterol/HDL Ratio 2.88 EMG/NCV Impressions Left/Right Peroneal Motor Amplitude Is Reduced at the Fibular Head. I Suspect Peroneal Neuropathy At The Fibular Head. Absent Medial Plantar Sensory Latencies Suggest Small Fiber Neuropathy. ECG Sinus tachycardia - 119 BPM MRI Cervical W/Wo Contrast C4-C5 Slight Dehydration, There is minimal broad posterior bulging. Central canal and neural foramina are within normal limits. IMPRESSIONS - No significant dis herniation or central canal stenosis. No abnormality or enhancement of the cervical cord is identified. SSEP Don't have sheet here with me, test was withing normal limits! Brain MRI Don't have report either, nothing out of ordinary. |
Did you engage in some sport or activity that could damage the nerves at the knee? (cause compression there)
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Neurosurgeon thinks it's possible that I do things to irritate the nerves, the nerve isn't compressed, he thinks just irritated. As for the feet, the EMG showing damange to those nerves suggest that the SFN could progress into Large Fiber as well. Are there anyother tests you would suggest? Do you see anything abnormal that could be causing the problem? |
I don't see any heavy metal testing. I don't see Vit D or B12 numbers. Most of your tests (I didn't check all of them) seem pretty normal...and you ARE young, and that is to be expected.
Also if I were you I'd scour your environment for toxins. There is a condition called paraneoplastic neuropathy. But it would be unlikely for you, at your age. You could get testing of IgM to see if you have a myeloproliferative disorder. http://brain.oxfordjournals.org/cgi/...full/123/4/710 You may have to investigate genetic testing for CMT. If you turn out positive for this, you might be able to get opiates for pain at your age. But I think most doctors would be hesitant to start you on them at this time. |
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This is just so frustrating, thank you for all of your help, it's just like this big circle that you must run around several times before you can acquire a simple clue to the equation! Pain isn't exempt from any age, neither is disease or illness and sometimes I wish more doctors would understand that. I'm sure I'll have to deal with this pain until I'm of "age" to be considered for such treatment which could make the situation worse. I DO understand exactly why this measured is followed, both sides have a very painted picture! |
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I'm not certain how old your parents are (look to your grandparents as well) but, as I've said before, CMT symptoms can become evident when you are young, old, or in-between. Or symptoms might never be that evident. Symptoms of CMT vary greatly even within the same family. Some CMTers have pain and others do not. Some is severe and some is not. I hope you find the answer. |
Kitt can answer your CMT questions the best.
At your age, the most likely culprits are damage from activities/sports, or toxins. (toxins include bacterial, viral, or poisons like heavy metals or certain drugs which we mentioned earlier). Peroneal nerve damage can happen from jumping and landing, or landing during parachute landings, for example. http://www.nlm.nih.gov/medlineplus/e...cle/000791.htm http://emedicine.medscape.com/article/1141734-overview Your diagnosis mentions peroneal nerve problems. That is what you should focus on for now. Metabolic problems come with age typically but not always. My PN started at 30 with hypothyroid issues. Patients your age can have type II diabetes. Your low fasting glucose at 74, may indicate insulin resistance...it can happen now in teenagers depending on weight and diet. My fasting glucoses used to be lower than yours. Doctors typically don't pay attention to LOW glucose...and that is a shame. |
And--
--the one thing that did jump out at me, other than what Mrs. D and Kitt are mentioning, is that for a young person, your TSH looks a little high to me, even though it was probably listed as within normal range.
the old TSH range was around .5 to 5.5, but the newer Academy of Endocrinology guidelines suggest .3 to 3.0 is a better range, given subclinical/borderline cases of hyporthyroidism. And, as Mrs. D has pointed out, hypothyroid conditions tend to result in fiborous tissue being deposited at the joint areas, often narrowing already narrow canals that nerves pass through, and thus causing nerve compression and neuropathy--and the knee joint, which the sciatic peroneal branch loops around very close to the hard tissues of the knee, certainly qualifies as such a place. (Do you feel anything going at ankles? wrists? elbows?) You've had a decent "first line" workup, but there are so many more specialized tests, as Mrs. D mentions. Wonder if you would benefit from a full thyroid panel, with antibody measures, measure of T3/T4, and so on. |
my TSH was between 5 and 6 back then. The new scale didn't exist. It was the radioactive scan that diagnosed me tho.
Now my TSH is between 1 and 2. If drawn in winter it is closer to 2, if summer it is 1.5 or so. I take 75 mcg levothyroxine. It used to be considered RARE for a male to have low thyroid functions. But today, more men are showing up every day with problems. It is thought this due to environmental pollution, as fire retardants escape into our water supply. These are thyroid mimics, and cause serious problems regardless of gender. |
Meds used
Hello all
I am new here so here is what I take: Neurontin - Started on it 4 years ago at a small dose and it helped, the pain is getting worse in my feet and legs so I am now maxed out at 3600 mg and it will help for awhile. The beginning side effects SUCK being sick to my stomach and sleepy, but they do go away. Lyrica - Started around 2 years ago (I think) it seems to help Tramadol & Hyrdocodone I take one around every 4 hours and switch back and forth. Taken along with wearing a fentynal patch it keeps me able to move around and live. Man reading what I wrote makes me sick that my life kinda sux right now. I want it back!!! |
bluesz,
Do you takeboth Neurontin & Lyrica, or have you switched ? |
I have probable sensory CIDP. (go back on the 8th to see if the nerve biopsy will confirm diagnosis)
I've tried Gabapentin in the past for nerve pain, however, it just amplified the pain. I remember one night taking it, and my legs were soo painful I was kicking them and moving about trying to get comfortable for hours. I don't have a whole lot of pain, its intermittent, and I can deal with it. So, I decided to just suck-it-up, and not take anything. |
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My Neuro explained Lyrica is 8x more powerful than Neurontin and if he up's the Neruontin and makes an equiv. does it will be about the same response? Has that helped you more than just the other? |
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So I cant tell you what does what I am a drone and take what those guys give me... shame on me.:o |
Joshua, I went through more pain drugs, tens unit, patches and who knows what else and nothing really worked. Officially my PN is idiopathic but my docs think it may be due to toxins although they can't prove it (long story there). My pain doc finally put me on Kadian which is a timed released morphine. They started with 10mg twice a day and when we got up to 80mg twice a day which was about a year later I told him to get me off the stuff. I really didn't think it was working but when the dose was first decreased to wean me off the drugs the pain hit like I never felt it before. I still wanted off and am finally on my last dose this month. I don't do anything for the pain now. One reason is I lost my insurance due to a divorce this month but Medicare kicks in 1 Feb. So we'll see what happens then.
Although I didn't like it Kadian was the only drug that worked for me. Good luck to you. |
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