Nerve biopsy test: Is it done by a neurologist or rheumatologist?

Posted by maryflorida @maryflorida, Aug 4, 2020

What kind of doctor do I see for the nerve biopsy test? My PCP sent me to a rheumatologist for a diagnosis. She feels it is fibromyalgia but prior doctor in Wash. state said it is neuropathy. She won't arrange for the biopsy. Which kind of doctor can finally give me a diagnosis or is she right? All she is offering is amitriptyline for pain. I do take norco too, but my PCP would like me to get off that. I need advice.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@jimhd

@rwinney I try not to dump on my wife, Marilyn. She made a negative remark about how I'm so focused on my pain, so a few years ago I made a promise to myself (never told her) not to say anything to her about my pain for one year. I kept the promise, and still haven't told her about it, and I don't think she noticed.

The last few nights I've been in tears - well, as close to tears as I get - with the pain level in my feet and ankles 9 or 10. I don't often say anything, but I think it would be hard to miss, with me trying to find a position that hurts less for a few minutes. Hard to do most of the time.

Depression can be hard to hide, but I'm pretty much unemotional, neither happy nor sad. That's pretty much been true all my life, and sometimes it's a good thing, sometimes not so good. I don't think anyone at church knows about my mental health except for two of the pastors. But then people have to wonder why I have a service dog. Sadie is always with me, including at church. Church is the only place that can legally refuse access to a service animal, and when I requested permission, the pastor didn't hesitate to allow her. That was a big factor in finding a church home. It told me a lot about the ministry ethics of the church.

Marilyn has her own pain issues, most recently bursitis in her hip. A cortisone shot a few weeks ago really helped. No cortisone shot for pn. Don't we wish. She understands pain, but I don't know if she really gets it all the time. I hate being a burden on her.

Today when we got home from church, I did yard work. I picked around 3 quarts of beans, some tomatoes, 6 cucumbers, a pattie pan squash, enough little potatoes for stir fry for supper and one tomato worm - nasty things. They've only been on one plant. I think I need to check out the plants more carefully when I buy them.

After I did the dishes, I headed for the recliner, and as soon as I sat, the pain shot up from 4 or 5 to 8. I wish I knew why sitting, lying down and standing still hurt so much more. I'm hoping for some relief from spinal stenosis surgery in 19 days. I'm having to hustle to get things in place before surgery. It would be nice if we don't have frost until the first of October.

Well, time for bed. At least taking my full dose of morphine at bedtime seems to help a little.

Jump to this post

HI JIM. I'm new to this reading your post I wonder if the recliner isn't part of the problem. I've read that recliners puts a lot of weight on your lumbar spine. As comfortable as they seem they may not be the best thing for our backs. Especially if your pain is less when you are standing that seems like an indication that sitting in the recliner is not good. My husband sits in his recliner so many hours of the day and evening and he has low back pain but he claims he's had it for years before. He is into his family genealogy and works on it on the computer many hours a day. He also reads a lot sitting in the recliner. He used to be very active with projects and home improvement but he has lost all interest and doesn't walk much either. I can't complain because I have neuropathy and weakness in my legs and I sit a lot too but not in a recliner. You might try physical therapy. I think getting outdoors and working in your garden is very good for you physically and mentally as long as you don't overdo. As far as sleeping is concerned you may have already tried this but I sleep on my side with a pillow between my legs (this is recommended by doctors and physical therapists). If I lay on my back I have to have a pillow under my knees which are bent. Your pain must be really significant if you are taking morphine to sleep. I truly hope the surgery helps. I want to suggest that you find a mental health professional to talk to. I understand depression quite well and the feeling of isolation that comes with this kind of illness. My husband suffers from terrible migraines and is knocked out sometimes for days and although I am used to being alone it can get to me sometimes. I often come to the point of thinking of ending my life but I talk to myself (not aloud) about what I will miss out on and how I will probably feel better the next day. I get through it.
I recommend a book by David Burns Feeling Good: The New Mood Therapy. Years ago I was seriously depressed and my doctor recommended this book. I read it and I learned some things that helped but I did not do the exercises. Then one day I was really down and I decided to do the exercises. It really helped a lot! It can't hurt. You can get a used copy for $6 on Bookfinder.com.
Good luck with the surgery.

REPLY
@catharbert

HI JIM. I'm new to this reading your post I wonder if the recliner isn't part of the problem. I've read that recliners puts a lot of weight on your lumbar spine. As comfortable as they seem they may not be the best thing for our backs. Especially if your pain is less when you are standing that seems like an indication that sitting in the recliner is not good. My husband sits in his recliner so many hours of the day and evening and he has low back pain but he claims he's had it for years before. He is into his family genealogy and works on it on the computer many hours a day. He also reads a lot sitting in the recliner. He used to be very active with projects and home improvement but he has lost all interest and doesn't walk much either. I can't complain because I have neuropathy and weakness in my legs and I sit a lot too but not in a recliner. You might try physical therapy. I think getting outdoors and working in your garden is very good for you physically and mentally as long as you don't overdo. As far as sleeping is concerned you may have already tried this but I sleep on my side with a pillow between my legs (this is recommended by doctors and physical therapists). If I lay on my back I have to have a pillow under my knees which are bent. Your pain must be really significant if you are taking morphine to sleep. I truly hope the surgery helps. I want to suggest that you find a mental health professional to talk to. I understand depression quite well and the feeling of isolation that comes with this kind of illness. My husband suffers from terrible migraines and is knocked out sometimes for days and although I am used to being alone it can get to me sometimes. I often come to the point of thinking of ending my life but I talk to myself (not aloud) about what I will miss out on and how I will probably feel better the next day. I get through it.
I recommend a book by David Burns Feeling Good: The New Mood Therapy. Years ago I was seriously depressed and my doctor recommended this book. I read it and I learned some things that helped but I did not do the exercises. Then one day I was really down and I decided to do the exercises. It really helped a lot! It can't hurt. You can get a used copy for $6 on Bookfinder.com.
Good luck with the surgery.

Jump to this post

@catcando @rwinney @jimhd Wow, here I've been over in other discussions the past couple hours doing my usual catch-up on the Daily Neuropathy News, when the real action was happening over here. Rachel, you are never up now. Wow!

My deepest most earnest sympathy and sorrow for you guys and what you are describing about your lives, both with your pain and with family who just can't seem to "get there" when it comes to the deepest understanding of what you are going through. I have none of what you go through. As much as I try to "be there" for you guys, and, of course, for my wonderful spouse, I can't sustain it. I forget. I do. I am solicitous as I can be, like Kevin Rachel, I'm like "do you need this?" "can I do that for you?" etc. But I am one who likes to keep it light, wanting to be humorous, I just can't keep the pain you all are experiencing in the forefront of my mind all the time, but yet you are experiencing it all the time. It must be a rare person that can be there ALL the time. I just try to be available. I am always ready to pour it out as Linda indicates a need, but it sure is easy to forget if she' not giving me the cues.

I feel very deeply when I feel. But that too gets exhausting. Ugh, nothing about neuropathy is GOOD. I'm sick to death of having to know how bad it is for you guys and I can't do a damn thing. Sorry.

@catcando, you seem like a really great person and I am sad for your pain also. The only thing I'd say about your post (besides thinking how nice you sound, and caring) is just go and read a few of Jim's recent (last couple weeks) posts to get a sense of his experiences with depression. You can see them by clicking here @jimhd ; he has been through it, this man has, and then some. I have fallen head over heals in love with him and with Rachel and with all of the people here. It came unexpectedly right out of the blue since January when I joined.

OK, sorry you guys. I'll go take a walk and try to stabilize. Best to you, Hank

PS: I just proofread this. It's not saying enough. It will have to do.

REPLY
@jesfactsmon

@catcando @rwinney @jimhd Wow, here I've been over in other discussions the past couple hours doing my usual catch-up on the Daily Neuropathy News, when the real action was happening over here. Rachel, you are never up now. Wow!

My deepest most earnest sympathy and sorrow for you guys and what you are describing about your lives, both with your pain and with family who just can't seem to "get there" when it comes to the deepest understanding of what you are going through. I have none of what you go through. As much as I try to "be there" for you guys, and, of course, for my wonderful spouse, I can't sustain it. I forget. I do. I am solicitous as I can be, like Kevin Rachel, I'm like "do you need this?" "can I do that for you?" etc. But I am one who likes to keep it light, wanting to be humorous, I just can't keep the pain you all are experiencing in the forefront of my mind all the time, but yet you are experiencing it all the time. It must be a rare person that can be there ALL the time. I just try to be available. I am always ready to pour it out as Linda indicates a need, but it sure is easy to forget if she' not giving me the cues.

I feel very deeply when I feel. But that too gets exhausting. Ugh, nothing about neuropathy is GOOD. I'm sick to death of having to know how bad it is for you guys and I can't do a damn thing. Sorry.

@catcando, you seem like a really great person and I am sad for your pain also. The only thing I'd say about your post (besides thinking how nice you sound, and caring) is just go and read a few of Jim's recent (last couple weeks) posts to get a sense of his experiences with depression. You can see them by clicking here @jimhd ; he has been through it, this man has, and then some. I have fallen head over heals in love with him and with Rachel and with all of the people here. It came unexpectedly right out of the blue since January when I joined.

OK, sorry you guys. I'll go take a walk and try to stabilize. Best to you, Hank

PS: I just proofread this. It's not saying enough. It will have to do.

Jump to this post

@jesfactsmon It says more than enough Hank. You are a special, special man and a blessing to know. Be good to yourself today. 😊

Rachel

REPLY
@jimhd

@rwinney I try not to dump on my wife, Marilyn. She made a negative remark about how I'm so focused on my pain, so a few years ago I made a promise to myself (never told her) not to say anything to her about my pain for one year. I kept the promise, and still haven't told her about it, and I don't think she noticed.

The last few nights I've been in tears - well, as close to tears as I get - with the pain level in my feet and ankles 9 or 10. I don't often say anything, but I think it would be hard to miss, with me trying to find a position that hurts less for a few minutes. Hard to do most of the time.

Depression can be hard to hide, but I'm pretty much unemotional, neither happy nor sad. That's pretty much been true all my life, and sometimes it's a good thing, sometimes not so good. I don't think anyone at church knows about my mental health except for two of the pastors. But then people have to wonder why I have a service dog. Sadie is always with me, including at church. Church is the only place that can legally refuse access to a service animal, and when I requested permission, the pastor didn't hesitate to allow her. That was a big factor in finding a church home. It told me a lot about the ministry ethics of the church.

Marilyn has her own pain issues, most recently bursitis in her hip. A cortisone shot a few weeks ago really helped. No cortisone shot for pn. Don't we wish. She understands pain, but I don't know if she really gets it all the time. I hate being a burden on her.

Today when we got home from church, I did yard work. I picked around 3 quarts of beans, some tomatoes, 6 cucumbers, a pattie pan squash, enough little potatoes for stir fry for supper and one tomato worm - nasty things. They've only been on one plant. I think I need to check out the plants more carefully when I buy them.

After I did the dishes, I headed for the recliner, and as soon as I sat, the pain shot up from 4 or 5 to 8. I wish I knew why sitting, lying down and standing still hurt so much more. I'm hoping for some relief from spinal stenosis surgery in 19 days. I'm having to hustle to get things in place before surgery. It would be nice if we don't have frost until the first of October.

Well, time for bed. At least taking my full dose of morphine at bedtime seems to help a little.

Jump to this post

My prayers are with you and a successful surgery

REPLY
@rwinney

@jimhd Hey Jim. I hear you loud and clear. It's 3:40 am and I'm up in back and shoulder pain. I was so pleased to have received enough help from marijuana earlier that I went to bed with out my 4th hydrocodone. That means no hydro since 2:30 pm. I write down every pill I take. I was ticked pink for that to happen as anytime I can go without, pleases me. I seem to typically share my good news with my husband and he gives me a verbal pat on the back. The other night, as I sat next to him and watched a movie, pain was swirling throughout my legs...muscle tighhtening and nerve pain. To the point of rubbing them, moving them in various positions to attempt to find comfort.Up and down and all around. I made some tiny whimpering noises ( I say tiny cause I'm no drama queen!). I was up, I was down. Then the brightness from the TV screen ran my eyes into the ground. I pushed watching until I just couldn't take it anymore. My husband did not say one word., not one touch.

Anyhow, I will ever only indirectly ask for sympathy if my psychological state is fragile and I know I need reassurance. It would have been so comforting to me if my husband said one empathetic word in that moment. I dont need a big gush of emotion. Maybe just, I see your suffering and I'm sorry. His way is to say, can I get you ice or heat? I mean, it's something I suppose. My hope is that when I'm at Mayo Pain Rehab in October, he benefits from the spousal sessions. It's not easy on him and I know he bares my pain too, just in a different way.

My son, (and Sunny, this is for you too) seems to never want to ask how I'm feeling or doing? He's 27 now and on his own. He seems to only want to bring me distraction and if I go there with reality, he seems quite uncomfortable and wants to redirect me. Pretty sure it's hard for him to see Mom this way now, and having issues since age 43. My boy loves me and I have no doubt about that.

Last January, I was very emotionally delicate and let my husband know I needed more support from he and the kids. Maybe that was wrong, I felt a little weak in asking. I also felt like things were bad enough so that if I asked, they damn well knew I wasnt very stable. It takes a lot for me to ask and they know it. Anyhow, my husband, Kevin. spoke to the kids and told them, Mom needs more support from you. They were great and gave it too me with text messages and phone calls asking me how I was doing, finally My daughter, 18, actually sent flowers from college! My son was there with his voice to comfort.

So yes, Jim and Sunny, ask when you really need to ask. It's ok. Even though our pain is ongoing, they cant hang, and we wouldn't want them to. I feel they take pleasure in knowing distraction is the best medicine for us and hearing the words that we are in so much pain, hurts them deeply. That's hard to take when you see your hero, your mentor, your partner, your spouse struggling.

I grew up since age 8 with a Mom who lived in chronic pain. I'm sure I dropped the ball with her plenty of times over the years by not giving her what she needed. Although I've been with her every step of the way through setting her baths up when I was a little girl and fetching her things when she couldn't walk to being at every single surgery over 42 years. I grew up understanding more about pain than most kids. Now, I come to a whole new understanding as I walk in pain's shoes also. My mom never once asked for emotional help from me. She sucked up everything and I didn't know how. There are 2 different examples.

I'm forced to think of the late incredible actor Chadwick Bowsman who lost his battle with colon cancer at such a young age. He was publically silent about his struggles and battles. Heroic? I think so.

Jim, I got on a roll, sorry. Back to why I think you have more pain when sitting....2 things: 1. I believe, for me, that sitting places direct pressure on the nerves and 2. once sitting, the body refocuses, the movement and activity and distraction stops. The brain slows down and feels more. I'm no dr. that's for sure!

I know you are feeling anxiety over your upcoming surgery and I want you to know I will be rooting for you in a BIG way buddy! I hope so much that it will bring you well deserved relief. ❤ We, here on Connect, got your back Jim!!

My best,
Rachel

Jump to this post

Thank you so much for your story Rachel! I kind of got a chuckle because I don't need to let my husband know I'm in pain because especially in the mornings when I can barely walk that brings forth some quiet sort of moaning. Sometimes I do have to breathe with my pain like when I was in labor but it's a very subtle quiet sort of Noise. And with my husband, I can tell him because he asks but I mostly smile and am cheerful even when there are tears. It's weird. There are times now and then that it's like I have less than one nerve left and the mere barometric pressure is on it so I can be short but it's quick and I apologize for it.
All the best, off for another covid-19 test for another procedure Wednesday. Nerve block in spine.
Sunnyflower 😊

REPLY
@sunnyflower

Thank you so much for your story Rachel! I kind of got a chuckle because I don't need to let my husband know I'm in pain because especially in the mornings when I can barely walk that brings forth some quiet sort of moaning. Sometimes I do have to breathe with my pain like when I was in labor but it's a very subtle quiet sort of Noise. And with my husband, I can tell him because he asks but I mostly smile and am cheerful even when there are tears. It's weird. There are times now and then that it's like I have less than one nerve left and the mere barometric pressure is on it so I can be short but it's quick and I apologize for it.
All the best, off for another covid-19 test for another procedure Wednesday. Nerve block in spine.
Sunnyflower 😊

Jump to this post

@sunnyflower My very best to you with your procedure. I hope you will be ok. Oy. All just too much. Lori Renee

REPLY
@bustrbrwn22

My prayers are with you and a successful surgery

Jump to this post

@jimhd I love you. Absolutely love you. I think you are such an inspiration. I have no idea why sitting is so hard. I have that, too. And my feet must be elevated when sitting, or pain soars to a 10+ immediately. I have given up trying to figure out why PN does what it does. It just does!!!! My best to you on your up coming surgery. I cannot believe you did not talk about your pain to Marilyn for one year. If I was your wife, I would be asking you every day how you are, and doting on you till I making you utterly crazy. We are all so different!!! Love to you, Jim Lori Renee

REPLY
@lorirenee1

@sunnyflower My very best to you with your procedure. I hope you will be ok. Oy. All just too much. Lori Renee

Jump to this post

Thanks Lori Renee! I always chuckle when you say Oy!!! I say it all the time too! Hope you have a really good day! xoxox Sunnyflower

REPLY

I think only neurologists would be qualified to administer and interpret the EMG.

REPLY
@catharbert

HI JIM. I'm new to this reading your post I wonder if the recliner isn't part of the problem. I've read that recliners puts a lot of weight on your lumbar spine. As comfortable as they seem they may not be the best thing for our backs. Especially if your pain is less when you are standing that seems like an indication that sitting in the recliner is not good. My husband sits in his recliner so many hours of the day and evening and he has low back pain but he claims he's had it for years before. He is into his family genealogy and works on it on the computer many hours a day. He also reads a lot sitting in the recliner. He used to be very active with projects and home improvement but he has lost all interest and doesn't walk much either. I can't complain because I have neuropathy and weakness in my legs and I sit a lot too but not in a recliner. You might try physical therapy. I think getting outdoors and working in your garden is very good for you physically and mentally as long as you don't overdo. As far as sleeping is concerned you may have already tried this but I sleep on my side with a pillow between my legs (this is recommended by doctors and physical therapists). If I lay on my back I have to have a pillow under my knees which are bent. Your pain must be really significant if you are taking morphine to sleep. I truly hope the surgery helps. I want to suggest that you find a mental health professional to talk to. I understand depression quite well and the feeling of isolation that comes with this kind of illness. My husband suffers from terrible migraines and is knocked out sometimes for days and although I am used to being alone it can get to me sometimes. I often come to the point of thinking of ending my life but I talk to myself (not aloud) about what I will miss out on and how I will probably feel better the next day. I get through it.
I recommend a book by David Burns Feeling Good: The New Mood Therapy. Years ago I was seriously depressed and my doctor recommended this book. I read it and I learned some things that helped but I did not do the exercises. Then one day I was really down and I decided to do the exercises. It really helped a lot! It can't hurt. You can get a used copy for $6 on Bookfinder.com.
Good luck with the surgery.

Jump to this post

@catharbert Thanks for writing. I do see a therapist every week, and have been for 14 years. Pain when sitting is pretty much the same, whether it's in a dining chair, a recliner or driving the car. If I walk very long, my feet and ankles will begin hurting more the longer I walk. We have a big place, even though 8 of the 10 acres are in use as pasture for our neighbors' cows and horses, and I'm really thankful for my riding mower.

I have the same approach to sleep position as you. I use a Bipap machine because of sleep apnea, so I usually sleep well if pain doesn't wake me up. I put a pillow between my knees because if they touch, it sends pain signals to my feet, and if I lie on my back, my heels will start hurting.

It took a few years to find the antidepressant that works, and I've been taking it, Wellbutrin, since the end of 2005. So far so good. My doctor prescribed morphine sulfate contin 8 or 10 years ago for the pain in my feet, and it's the only medication that's helped long term. I've tried one medication after another, and some have helped, but only for a month or two. I had a spinal cord stimulator implant in 2017, and it was wonderful! I'd forgotten how it felt not to be in pain. It gave me pain relief for a year. The surgeon has said that stenosis surgery could help enough to allow the stimulator to do its job again. I'll know in a month.

Again, thank you for writing.

Jim

REPLY
Please sign in or register to post a reply.