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Updating my SFN...it's been awhile :)
Gosh I don't even know where to start.
Let me see: Was taken off 1800 mg gabapentin and put directly on Lyrica 75 mg for 3 weeks. During week 2 I started having terrible stomach aches....like the ones you have when you are a kid. Dr Greer said he has never heard of that symptom but took me off of it for 3 weeks to see if it was the Lyrica and it was. So for 6 weeks I was off gabapentin and only on 60 mg of Cymbalta at night. My pain levels went through the roof ! So at least I knew the gabapentin was helping the pain some. When I went back Dr Greer titrated me up to my normal gabapentin of 1800 mg in 3 weeks. I got to the 1800 a week ago and am still experiencing debilitating pain. Yesterday was the first day I actually felt better in my head even though the pain level is still the same. I can deal with the pain a lot better when my head is on straight and not zoned out. I know it was stupid and I did pay a price for it but I was given decadron for fatigue while having chemo. Only used it once or twice and it was awesome. So when we went to St George Island, FL during the week of Memorial Day I used one of the pills.....I was on cloud 9 for 2 whole days ! There were 14 of us in one huge house and we had a really good time. It's a 6 hour drive for us and riding or driving is something that really sets the SFN off. I sat in the back seat with pillows and blankets and put my feet in my grandson's lap. The trip wasn't too bad down or coming back thank goodness. I floated in the pool for hours and sang at the top of my lungs......tickled the grandkids.....and of course they joined in too ! Just wanted to share that with y'all :) My last appoint with Dr Greer was last Friday. He said he has used the top 3 drugs for my SFN, gabapentin, Lyrica and Cymbalta and he feels like it's time for me to see a pain mgmt. specialist. So......I made another appointment with Emory in Atl for Sept 9th. Some of you may remember I had an appointment in March but I cancelled it. I can't see the same dr they initially scheduled me for in March as she doesn't have an appoint for new patients until Dec of this year. They put me with another Dr that is listed to treat PN. I'm thinking I will need to see whatever dr at Emory that specializes in SFN but I'm going to see this lady first. And I have decided that if I don't feel she knows enough about SFN I will have the courage to ask for a referral to a dr that does at Emory. Nicely ask of course. I sensed that Dr Greer is thinking SCS but that thought really scares me. I've read through the SCS forum but really can't remember if I saw anyone that had one specifically for SFN. The pain in my hands, legs and arms has become much worse over the last couple of months. I had one day last week that my hand/fingers hurt worse than my feet and that is something I'll tell you ! It hurt just to try and pick up a glass with nothing in it. I've had a dear friend (you know who you are sweet lady) suggest that I try a TENS unit first to see if I get any relief. Any thoughts on trying that ? If it helps does that mean that possibly the SCS might help ? As I've stated many times before on here......I have 3 goals. 1. To be able to clean my house 2. To be able to grocery shop once a week 3. To be able to cook dinner every night/or at least 5 times a week So far I've reached none of these goals. It gets pretty depressing at times. My family has suggested that I talk to a mental health professional that has experience in talking to people with chronic pain. I've been going to call for an appointment for weeks now but still haven't. So that's is where I'm at today. Still hanging in there and still fighting every step of the way. Thanks to everyone who takes the time to read my update. Debi from Georgia |
Thank you for the update. I hope you get better and better. Take care.
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Rebuilder
Hi Debi,
If you haven't heard of The Rebuilder, it's a TENS unit for the nerves that seems to provide some benefit. Two problems: they are expensive (about $800) and I believe the company has been reprimanded by the FDA for making false claims as a cure for neuropathy which likely deters people from trying it. My experience however is that it does help. I just used mine last night. |
Hi Debi,
Im sorry to hear that you haven't reached any of your goals. My family also suggested about a year ago that I see a therapist that deals with chronic pain patients. Fortunately, I found I really good one. She actually ran chronic pain groups for years. She does mediation tapes for pain for me etc. She also helps me when I feel like I've lost my entire life. All or nothing thinking. She is good at listening to me vent too. I tell her things about how I feel emotionally and physically that I don't want to tell my family and friends. I'm sure by now you are realizing that I'm suggesting you give it a try. It really does help me. |
I purchased a REBUILDER a few years ago. It did nothing for my PN. Had been posting at that time on a different site and mentioned if someone wanted to pay for the shipping, they could have the Rebuilder "free" of charge. I did get someone from Canada that did take advantage of my offer. I had asked him to let me know if and how it worked for him; but never heard from him again.
As we all know, many things work differently for all of us; this just took up space for me. Gerry |
Debi,
Hope the Pain Management doctor will be helpful to you. I had tried the Lyrica, Cymbalta each for short time. Experienced nasty side effects and did not seem to help. Finally went to a different Pain Management doctor referred by a spine/orthopaedic doctor. Have been with this PM doctor for about 5 years. Had tried different injections/procedures; but unfortunately daily narcotic pain medication with instructions of amounts and time lapse between doses, etc. has kept my 24/7 pain level tolerant. I do have someone come in every two weeks to do floors, vacuuming, etc.; but am able to keep up with laundry and keeping the house in order. Also, while our meals are not as good as they once were, I do make meals that are less time consuming. Without the pain meds; don't think I would be able to manage. I do not drive; but am fortunate my husband picks up most of the groceries. I do go to the local store occasionally with him; but walking around in the bigger stores would be difficult. Hopefully you will soon get some pain relief. Have not tried seeing a therapist dealing with chronic pain. But probably not a bad idea to be able to vent and not feel guilty complaining to family and friends. Gerry |
Dear Debi,
I am so glad you posted to see if anyone on NT has had an SCS implanted for Small Fiber Neuropathy as I think they would be best to let you know their experiences and if it was beneficial. I hope someone with SFN and an implanted Spinal Cord Stimulator will come along and express their experiences. I will subscribe to this thread to keep informed of any responses. Wishing you better days. Hoping people with your type of neuropathy will respond quickly and give you some insight on what treatments help and which ones do not, other than just oral medications. I would also like to throw out a question of my own to the NT community concerning SCS implants. Do they work on the same principle and/or in the same manner as a TENS unit? If not, what are the primary differences other than the SCS being implanted and the TENS unit being external? Thanks to anyone responding to St. George. |
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I agree; would be good to have suggestions other than oral meds. I had tried just about everything; including some years ago, spinal fusion and laminectomy,as well as a failed trial Spinal Cord Stimulator. The oral meds were a last resort. Gerry |
Hi St. George
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So Sorry to hear you have not reached any of your goal and that your pain has spread to your hands and fingers. You do need some relief that is for sure and probably your family has a good suggestion. I have the 10s and did not really give it a fair chance. I am on Lyrica and take Xanax if need at night and waiting for my apt on July 2 for pain management for Cymbalta. Hope you are feeling Better and get the help you need as you don't need live in constant pain. :grouphug: |
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how r u now?
hey are you doing better now?
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Hi Debi
I I am so sorry to hear that things have continued to worsen, and at a fast pace. It makes perfect sense that you would be having a hard time dealing with it. Your goals are so much like mine, and also so much for the benefit of your family rather than yourself, that I can really empathize. It is so difficult to adjust to not being able to be the perfect homemaker. Since I was a stay at home mom I felt that was my major contribution, and now I feel pretty worthless. I am only able to stand long enough to cook, or to food shop, because of the pain medication. (MS Contin). Both activities take a toll. If I go to BJ's it is ironic that I come home with$200 worth of food and am too exhausted to cook any of it. That is a take out day. I have also had to simplify meals tremendously, I have a pampered chef covered baker that makes chicken breasts in the microwave and is a huge time and labor saver. My husband or son do most of the food shopping. I have never considered a spinal cord stimulator, but my dentist, of all people, recommended a pain pump because I was grinding my teeth at night in pain. For now the pills are working well enough so I am not looking to make a change. I am not able to houseclean, and I never will be. If I sweep and mop the floors I have pain in my hands and arms for days afterwards. Reaching into corners or tubs I fall over. I have a dear friend who cleans for me when I ask her (I do pay the going rate) unlike a cleaning service she does what I need and I don't have to clear up all the clutter first. I actually rested on my bed while she cleaned my bathroom and we chatted. When I had a regular cleaning lady I had to straighten everything up and get the whole family out of the house for the day, it was too stressful. It bothers me tremendously that the house does not usually look very presentable. We have dogs which shed constantly, a shepherd and a pug, which makes it worse. I go into a mini frenzy when my son's girlfriend comes over, girls notice things more than guys, but there isn't much I can do besides make him vacuum. I burn a lot of candles! I haven't been on the forums for a while, too much going on at home, fatigue levels much higher than usual. For me it is gradual, two steps back, one step forward. My daughter has been diagnosed with severe acquired scoliosis, at 30, after two babies. She had a clean EMG and I thought she was CMT free, but this seems suspicious to me. My biological sons both have it, but neither is likely to have children, one is engaged but slightly autistic with severe CMT symptoms and afraid of his genetics being passed down, the other has a girlfriend on meds which make it unlikely she would be able to have children. I hope that you find relief soon. I believe that there is a medication or treatment out there that can give you some quality of life back. It seems cruel that you have to wait three months for an appointment. |
Thanks for the update Susanne. Sounds like a very trying time for you. Take care.
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Good morning Susanne C :)
First off I want to thank everyone who either replied to this thread or read it. I appreciate it very much :) What a great bunch :hug:
Susanne....thanks so much for sharing. I did not sleep at all last night. I helped my daughter in the kitchen last night finishing dinner and I knew not to do it but did anyway...stupid me. Even the pain med would not bring the pain down to a level where I could sleep. Hands, arms and the dang feet ! I was so mad I almost got up and posted a rant to SFN.....how dare it do this to my life ? Being on my feet for any length of time is my enemy. I have every type of symptom you could name happen to my feet in a 24 hour period. Some days I can deal with it and some days I can't. I'm tired of not being able to do anything, can't clean, can't stand to cook, can't clean, can't go anywhere except the dr's and on and on....you all know the routine. Worthless.....yep Susanne that's exactly how I feel. My daughter, Bless her sweet heart, has been cooking for us and my mom every night for weeks. Either here or at her house....only one house between us now. My mom loves it but my husband isn't too thrilled with it. I'm very close to telling him if he doesn't like going to her house to eat then he can start cooking...something he has never done since we've been married.....I'm confident that he can cook......he's a smart man. I am so glad that your husband and son help you out. And I'm right there with you on the pets too.....we have 2 small inside dogs and one 20 lb fat cat named "Bob". My husband rescued him and he was almost dead. He weighed about 5 lbs....an operation and 4 months later he weighted 22 lbs......that was about 7 years ago :) I would say my house is not presentable either......I'm sitting here looking at an A1 Sauce bottle that needs to be put up....good luck with that. May happen in a day or 2. Bob the cat has used the side of my couch....the side you see when you come in the door, as a scratching post and I don't even care.....I love that cat and can replace furniture but can't replace good old Bob ! My outside cat, Black Kitty, lol never named him.....sits on the kitchen window sill.....soon after I had my windows replaced he torn the screen up....all of it ! And I don't care about that either....I get so much pleasure walking into the kitchen and seeing him sitting in the window :) Yep....light the candles before they get here...lol Very sorry to hear about your daughter......I'm guessing it causes a lot of spinal pain ? And I'm so glad to see you back....always love your posts. I'm really going to try and stay away from an SCS...I don't even know if it works on SFN or not. The only pain mgmt. dr I saw was nice but just jumped on the SCS train when he saw my biopsy results.....0....nothing....no A & C fibers left or whatever happens to them. I do have PVC's (heart) and a friend says that might be a factor in me not getting one also. I know everyone has PVC's but mine got up to 33,000 in a 24 hour period.....every 3 heartbeat was a flip flop. Thank goodness I could not feel them. They did heart ablation and the # came down to 672 (weird that I can remember that) and then after chemo they are back up to approx. 7,000 as of last June. I really need to do the monitor thing again but will wait until I'm ready to have the ablation done again. Dr said it was coming. Wasn't the worst thing I've ever been through but I won't be rushing up to Emory anytime soon to have it done. I had to be fully awake. Any helpful meds for me would quiet my heart PVC's and they needed to see them to zap them....lol....burned 11 places in my heart that day :) I'm going to try and lay down for awhile....getting that wozzy,haven't sleep feeling and the words on the screen are blurring :) Take care sweet Susanne and please keep us posted. Debi from Georgia |
Thanks very much for the update Debi.
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I have been told I have probable SFN with lots of hand and foot burning pain and pain from standing/ walking, I recently had a lignocaine infusion once a week for 3 weeks, this gave me about five weeks pain free it was heaven, unfortunately it's worn off now so I am back to sleepless nights, but apparently it can be effective for much longer for some people.
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September is a while off to be in the kind of pain that you describe. I went to pain management and have the compound cream. The compound crème is like a miracle. Today I hardly felt any Neuropathy symptom. If you can make your pain management appointment and get the cream I highly recommend it. Uglogirl aka Gloria:) |
Hey Billylyne :)
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Sometimes I sleep all night long and then some and sometimes I don't sleep at all. I had someone on here recommend Ambien to help me sleep. It is by prescription. Maybe you can ask your dr about it or something similar. If I stand too long or walk too much I pretty much have to hobble to a chair. That's why I'm home 99% of the time. I did manage to go to Home Depot last night and buy 3 plants for my yard....I've been wanting them for months....Even went out to dinner with my daughter and son-in-law....I'm paying for it today but it was well worth it. Take care and please keep me posted on your treatment. Debi from Georgia |
Hi Gloria :)
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I'm really putting a lot of faith in Emory....hope I'm not disappointed. I do know they have a pain mgmt. clinic and I'm guessing the neuro will refer me to them but I don't really know. Hopefully they will check me head to toe and ck all my blood work first. I guess I'm in the mindset that nothing is really going to help get 'rid' of the pain since my dr's just shake their heads when they see my biopsy. Just about talked myself out of a SCS if they suggest one. Thanks and I'll talk to you soon my friend :) Debi from Georgia |
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