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    Old 04-25-2009, 11:04 AM   #1
    Ruby8
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    your posts lets me know I am not crazy

    The information you all have posted lets me know I am not crazy--that others have been discounted by their neurologists and others because SFN doesn't show up on the standard EMG tests. My neurologist sent me for a psych referral because he thinks I am imagining my symptoms. Meanwhile from your posts I find all my symptoms, pain in feet, numbness, burning that goes beyond just the feet, pins and needles, etc. are just what you all are experiencing.

    My rheumatologist does believe me and just upped my Gapapentin dosage to 300 mg twice a day. Its seems to help the pins and needles but not the burning.

    I'm really having a bad time and would appreciate suggestions from anyone finding successful pain relief. I don't know how you all (and I) continue on based on some of the descriptions of the pain you are in.

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    Old 04-27-2009, 08:39 AM   #2
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Yes, who would believe it...what a blessing it was for me to find out that others were experiencing the same types of pain and actually believed me!! My sister and I have family members who still doubt that it can be that bad, yada, yada. It infuriates me. Who in their right mind would "pretend" to be in this much pain!
    I am also glad to see that you describe your pain much like we do...railroad stake being driven in...etc. We have stingers, creepy crawlies, stigmata, railroad spikes, glass cuts, burns, you name it. Its the only way you can describe it to anyone! This stuff is so debilitating. Who would have thought that 4 years ago i was virtually super human..working 14 to 15 hour days, keeping my house spotless, participating in everything in the family, etc. And now, this poor, pathetic shell of my former self. That's ok though, i am not ready to give up the good fight!

     
    Old 04-27-2009, 11:44 PM   #3
    Bobby Flay
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    Re: A Day In The Life Of Small Fiber Neuropathy

    I took advise about writting a letter to my Neuro. and it worked! He finally gets it. I am now taking IV IgG once a week. Pain in the butt though because it takes 4 hours to run in and you can't really do anything else plus, you have to go to the hospital. I guess since I am a nurse that they ought to just let me do it at home. Anyway, I really think it is working! My right hand is much more sensitive to touch, temp. etc. Still numb at the tips but it feels like it is improving. The numbness is better but the sharp stabs are still there, hoping that goes away too. I read a story about a guy who took these treatments and after the 19th dose, his pain and numbness was completely gone. It is all natural and that makes me feel better, just knowing that. The side effects are pretty nasty, lost 23 pounds in 2 weeks, felt dizzy every time I stood up like I was going to pass out that lasted 10 days, abd. cramping and nausea X 10 days, I have these blisters on my face, arms, legs, chest and back but my next treatment is on Wednesday and he is going to give me Prednisone, Benadryl prior to starting it to prevent all of this stuff. My family and my boss is really pushing me hard to go through with the treatments despite the side effects because they have seen me suffer for 10 years. This reminds me of being on Chemo. My boss wants me to get back to work and my family is tired of me being grouchy all of the time from the pain.

    Listen Aussie I think that Tramadol is great but it doesn't work for everyone because it is not a narcotic. I would not recommend it for someone who is already taking Vicodin. Also, for the gal who's family doesn't believe in her pain, join the club. I feel your pain sister. It is like if you don't look sick than you can't be sick. My mom hasn't talked to me in 6 months. I have been on Vicodin for 2 years now and it is not working anymore. I just take regular strength and so he added Methadone to my Vicodin and that has worked wonders. I have also started seeing a counselor. We are working on ways to visualize putting my pain someplace else. It is going to take some practice. See, I can't take pain meds at work, I am an RN and I can't take pain meds if I know I will be driving my kids around to different activities, I would never forgive myself if I hurt a patient or my children because I was too selfish to not go without. Anyway, I have to have a way to ease the pain when I can't take pain meds. Has anybody else tried visualization and if so, what have you visualized?

    Anybody else try this IgG? What sort of side effects have you seen?

    Last edited by Administrator; 05-08-2009 at 01:04 AM.

     
    Old 04-28-2009, 05:57 PM   #4
    Aussie100
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Bobby, I was not trying to recommend Tramadol for anyone, I was asked a question about myself by a member and I replied to that member.

    As a matter of fact in the beginning I did try a narcotic [oxycontin] and it did nothing but made me feel awful and the same happened with an anticonvulsant [tregetol] & also neurotin, but I know other neuropathies they do work for and others they donít, so I really do think meds are a very individual thing, we are not all the same in our reactions to different meds, so they should only be evaluated by the patient themselves for their effectiveness and very importantly under strict supervision of their doctor.

    Aussie

     
    Old 04-28-2009, 11:22 PM   #5
    Bobby Flay
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Aussie:



    deleted


    I took that last year after I broke my leg. I liked the fact that I could take that during the day when I am driving my children around or when I am working because obviously I can't take narcotics during those times which in turn lets m pain become completely out of control. However, once you have started taking a narcotic things like Ultram, Ultracet, Darvocet and Nubain don't work anymore. If the Ultram would have been my sole means of pain control, I would have been screaming in pain.

    I just really wanted Ruby to be aware of the facts before her doctor tries to talk her out of or she asks for the Vicodin to be stopped and on to the Ultram/cet etc. If she wanted to try it, I would recommend weaning off the Vicodin while at the same time starting the Ultram/cet so she has both in her system. Most of my patients in similiar circumstances, are not able to tolerate the Ultram instead of the Vicodin. That is my opinion and so I shared it because that is what this message board was designed to do, right?

    Aussie every tried IgG?

    Last edited by Administrator; 05-03-2009 at 01:27 AM. Reason: disallowed subject

     
    Old 04-29-2009, 11:55 AM   #6
    Ruby8
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Bobby Flay - Thanks for sharing your experience. I'm not on vicodin, I'm the person whose Neurologist discounted her symptoms and instead sent for a social worker/psych referral. Thanks to this board, I know what I am experiencing is real and I am not imagining or overstating. My rheumatologist (who does believe me) started me on gabapentin. I did one 100 mg a day for a few days, then 3 100mg a day, then 4 100 mg a day and for the last week 300 mg twice a day. It seemed to be helping (can't tell because the SFN seems to be getting worse), but since on the 300 2xday I am a total foghead and just want to lay down all the time. Then my PCP gave me trial samples of Cymbalta, which I took 1 yesterday morning and one this morning. Seems to make me nauseated. My PCP says he will send me to a neuro outside the system (the one I see is the only neuro within the system--can you believe that?) if my next visit to the neuro doesn't go better. I'm pretty depressed today and just holding out hope that some meds can be found to help me without such bad side effects.

     
    Old 04-30-2009, 12:22 AM   #7
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Hi Bobby, no offence taking at all the trouble with neuropathy as we all know here, it is a very painful infliction and very hard to find the right balance to ease the pain but to also be able to function as best as one can in life.

    I personally could not function with oxycontin, neurotin or tegretol but the very high amounts of Tramadol did blunt the pain to some degree together with the Endep helped but certainly didn't take all the pain away, enough though for me to keep going but still suffering.

    A forum like this is a great place to offer support to others which is what I try to do here, when I read posts that remind me of exactly how I was treated when I first got the symptoms by so called medical professionals it really does get to me, the worrying part is it happens all over the world.

    Sorry Bobby I never had any IgG treatments.

    Take care
    Aussie

     
    Old 05-01-2009, 02:01 AM   #8
    Bobby Flay
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    Re: A Day In The Life Of Small Fiber Neuropathy

    Dear Ruby and Aussie:

    I take neurontin too, I take 600mg 3 times a day. Did you say that you take Oxycontin? Vicodin and Oxycontin and Percocet all have similiar chemical make ups. I have had the SFN for about 10 years now. That is the problem with these meds. When you first start taking them Aussie, yes you will be in a fog but as time goes on your body adjusts and you are able to tolerate them, eventually you will have to have them increased because your body builds up a tolerance to them and recognizes them as part of your normal make up and it no longer is effective for the pain. Same thing happens in cancer patients and I think that neurontin would also act the same way.


    deleted


    Ruby, how long have you been diagnosed? This disease is extremely depressing. The worst part about it for me is that people look at you and although you may walk funny and grimace constantly, basically you don't look sick so therefore how could you be. I think the other thing is that you want to do things but can't because of the pain and the function. Doctors are jerks in general, trust me. I went to a university hospital a couple of years ago when I was at my wits end for a second opinion. This is the only thing I got out of it "I totally agree with Dr. Kristl, he is doing everything that I would do" and then I got the bill for $5,000. One thing that I would suggest is that a couple of people have mentioned Neuropathy Centers of American, you can find the closest one near you by goggling, and supposedly they have a 95% success rate. I have never been to them because I am really getting to be a huge finacial burden on my family. I also suggest that you seek counseling. I just started 3 weeks ago and we are working on a lot of different mind over pain type of solutions and I am hopeful about that. Cymbalta made me really happy but made me sleep all day long and I am already tired from the SFN.

    It has been the single most depressing thing I have ever been through, mostly because I thought that I was alone and that it was all in my head.


    deleted


    People a lot of time want to only talk about the pain, to me that isn't helpful, but thats just me. I will say though that it has been the single most helpful thing that I have come upon. It has made all of the difference just knowing that I am not alone and it isn't in my head. I am probably going to lose my job in the next month or so because it has gotten so bad that I am having trouble walking and have very limited use and feeling with my hands.


    deleted


    I am so with you in spirit on being hopeless. Stay in touch here, it truly does help. Nobody else, not even your family truly understands and empathizes like someone who also has the disease.

    Last edited by Administrator; 05-03-2009 at 01:06 AM. Reason: read the rules; argumentative

     
    Old 05-01-2009, 11:17 AM   #9
    belinda1317
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    Re: A Day In The Life Of Small Fiber Neuropathy

    I was reading your post and agree about the depression. I am so fortunate to have a sister who has this disease and we each have the other to understand the pain and to troubleshoot with, lean on, and commiserate with. That, plus this board! Guys, I am telling you all...i reached a point of pain that had me so depressed i honestly could not foresee myself continuing to live with it. I did finally get on some anti-depressants, and while it doesnt help the pain at all, it does help me to cope a lot better (most days!).

     
    Old 05-19-2009, 07:36 PM   #10
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    Re: your posts lets me know I am not crazy

    I totally understand your frustrations, yes the nerve pain is there and it's hard to get some doctors to listen and I don't know why. For pain, have you looked into any natural creams, there is alot on the internet. Hopefully, things will get better.

     
    Old 05-26-2009, 12:17 PM   #11
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    Re: your posts lets me know I am not crazy

    Hello All,

    It has been awhile since I've posted. I am finally starting to get some control over my SFN. I lived with this disease for 11 + years without knowing what it was. When I was diagnosed I felt a huge weight lifted off my shoulders. Being able to walk into a doctors office and have a name for my pain makes all the difference in the world. I'm actually going to see my GP today for something unrelated to the SFN. For years, this guy told me my pain was all in my head. He told me "you have always been high strung and I believe you've manifested all the pain in your head." I haven't seen him since my SFN diagnosis but I'm going to take a lot of pleasure letting him know I'm not crazy, and that he was wrong. He's a good guy, but like many doctors, was quick to take the physiological route when his tests couldn't find anything. I've been working with a great team of doctors that helped me get the SFN diagnosis. They have always treated me with respect and given me the time I needed to explain my symptoms.

    I'm currently taking 30mg Cymbalta once a day. I'm slowly staring to wean myself off the Cymbalta however, under guidance of my doctors of course. It's been having a significant impact on my sex life and I'd like to see how I feel without taking it. I'm also taking 3 10mg Oxicontin a day. This drug really works wonders. It lasts a lot longer than the short term meds and I highly recommend it. The only problem is that your body does build up a tolerance over time. To help with this, my doctor also gave me a small supply of Norco 10/325 which I experience what they call "break through pain." Lastly I'm taking 250mg Soma once a day before bed time. This helps to relax my muscles in my back (which I don't think is directly related to the SFN) but with a combination of all the other medicine, helps me sleep through the night. I'm thankful for that. I'm one of the lucky ones who actually functions better on my medications. It allows me to be a lot more productive at work, concentrate, and interact (with more joy) in social circles. It essentially allows me to function and live a normal and more happy life. As I stated above I lived 11 + years without a diagnosis, bouncing from doctor to doctor, and with no medicine to help me. I don't know how I could go back to living without my meds. My SFN is idiopathic which means all they can do is treat the symptoms. I'm totally ok with that because at lease I've found doctors who are willing to help me.

    I can relate to everyone's stories on this message board and I pray for all of you. Don't let your doctors dictate the course of action you want taken...us as patients need to be persistent and respectfully demanding to get the treatment we deserve. I wish all of you the best and hope you are getting the treatment and love you need.

    Jason

    Oh, hi Bobby Flay!!! Hope you're doing better.

     
    Old 05-26-2009, 05:32 PM   #12
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    Re: your posts lets me know I am not crazy

    On a day when I am at my lowest in years, I read your post and I am uplifted and inspired by what you have been through and the point to which you have made it to.

    Yesterday my Rheumatologist dropped me for treatment of SFN and wants my GP to refer me to a pain clinic. I was mortified and embarrassed when she said she could no longer see me because I am intolerant to Lyrica, Neurontin, Cymbalta and Tramadol and she had no other suggestions. All the side effects were worse than the SFN and did little to help. I had extreme muscle pain, indigestion to the max, nausea, restlessness, inability to sleep and a deadful case of the "stupids" from Lyrica. Cymbalta had some measure of success but at$245/month was too expensive for me. So I left her office with my head hung down and absolutely shattered inside. I know that others such as yourself have battled with finding the right combination of medications to help you and I thought she would help me find the right combo. I had only been to her 3 times in the past 8 months for her help so I don't feel I was a pesky patient. She just couldn't help with the neuropathic pain and made no bones about the disgust she felt at my being unable to afford the Cymbalta.
    So I am back to square one. My GP says the pain clinic waiting list is so long that she thinks it could be up to a one year wait. She wants me to try Topomax and has given me 100 tablets of 30 mg codeine. The codiene is supposed to last 3 months. I also take a BP medication and a medication to keep my immune system from overfunctioning.

    I am so happy that you have found some relief! I had the same side effect from Cymbalta, which was tricky to deal with but I have been married for a good long time to a very understanding man.
    However I had a very difficult time stopping this medication. I was out of commission for almost 2 months due to stopping too quickly. I wish you an easier time, and you probably will be fine with your Dr's help.


    This forum has been a godsend to me and others, I know. It is people like you that remind us that we are not alone and that others have gone on to find help. As a former healthcare worked I have stood up and said the same words to patients about taking charge of our healthcare and to not be dictated to by doctors. Why, oh why, can I not find the strength and tenacity to do the same for myself?
    I thank you from the bottom of my heart for your words.
    It gives me heart, it gives me strength, but most of all, it gives me hope.
    My best wishes for your continued battle.
    Daisy

     
    Old 05-26-2009, 08:14 PM   #13
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    Re: your posts lets me know I am not crazy

    Sorry to hear you were transferred to a new doctor. Does the pain clinic have a cancellation list? I have found that many doctors here do and this has been successful for me.
    As far as being nauseated -I get it. I quite taking gabepentin 3 months ago for nerve pain and still am dealing with stomach issues. Luckily my gastroenterologist believes me and is being very helpful. Hope things get better.

     
    Old 05-27-2009, 01:49 PM   #14
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    Unhappy Re: your posts lets me know I am not crazy

    This is my first time posting anything I have read some of your stories and I feel for you guys so much. I know somewhat what your going through.I got nerve pain after having a surgery.Now I have had burning and pain down in the vaginal area all the time for the last two years.I have try several different meds.I just got put on cymbalta and I feel so sick and I am still burning .I have only been taking it for 4 days now so I am hoping it will pass and get better.I am so sick of going to doctors I feel like I can't live life normal anymore.I feel like I don't know what a normal life is anymore.No one understands none of my friends they just don't get it.My husband has been so good to me other wise I probley would have lost my mind by now. I am sorry to drop all of this on everyone but it feels good to hear your stories and me to able to talk to people that understand what I am going through.

    Thanks so much for listening
    P.S can anyone tell me side effects for cymbalta???

     
    Old 05-27-2009, 07:33 PM   #15
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    Re: your posts lets me know I am not crazy

    I've been taking meds for my SFN for a few months now, and here's my experience with Gabapentin (Neurotin) and Cymbalta. I was up to 100 mg Gabapentin 4/day and then my rheumatologist changed it to 300 mg 2/day. After changing the dosage I became so lethargic, I couldn't hardly make myself get out of bed--and talk about foghead, my thinking was very unclear. So, I went back to 100 mg 4/day. (Note that my neurologist recommended spreading out the dosage in 4/day so the drug would maintain a more even level in my system). Even though I cut back on the dosage, it has taken a number of weeks for the lethargy/fogginess to subside to where I feel nearly normal. Not sure how much the Gabapentin helped the pain, but what really helped was when I started Cymbalta. It made the pain minimal and when I started to feel better I realized how depressed I had been, so Cymbalta helped that too. If you Google "Cymbalta side effects," you can find the drug's known side effects. For me, it increased my nausea initially. You see, I had nausea and weight loss before I started meds, and I think this is an autonomic effect of the neuropathy itself. After being on Cymbalta for awhile, the nausea is back to the level it was. Anyways, my experience is the side effects go away over time.

    Daisy, I sure hope you can find a combo that works for you and SOON. Sounds like your insurance is pretty lousy not to cover the Cymbalta. Also, do you have a neurologist who would be more aware of the available drugs and combinations and who could help you more than the rheumatologist. Waiting a year for a pain management dr is ridiculous. One thing I've learned from this board is that we are all very different, and when one drug combo doesn't work for you then there is likely another that will help.

    Jason, you are an inspiration to me. So glad you made it through those 11 years and now have pain relief.

     
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