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Posted By : blackdove1 - 12/7/2008 1:50 PM
It is not that I don't think that those who are older and wiser can be of help, it is just that I feel so alone. All of my doctors say, "Yeah, I have an idiopathic peripheral neuropathy patient, but they are in their fifties."My husband and I just started our family and the pregnancy was torture. Iwent on disability and am still on disability. I have a 3 month old daughter who needs to be picked up and carried around and rocked and I am having a very hard time doing it. What happens when she weighs more than 11 lbs. I see mommies picking their kids up and swinging them around and I know I cannot and will never be able to do that.

My pain started at 20 and I am 2 weeks away from my 29th b-day. I, like most of you, have tried EVERYTHING except the pain pump. I hate increasing my meds and have refused to do so for 2 years and th epain is getting worse and worse. All-over burning, deep aching in my legs and arms (mid back down) and sharper pain in my low back and SI joints. I take 50 mcg fentanyl patch (every 48 hrs), 7.5 mg percocet 3x day, naproxyn 500 2 x day, neurontin 300 mg 3x day, and I took soma 3 x day along with lyrica before I got pregnant.I just tried the neurostimulator and on Friday they took the leads out and we decided it was not for me. Now I am looking into the pump....hoping to get the trial done ASAP. Any words of advice or experience with drugs that helped better than fentanyl on nerve pain? Thoughts about pain pump? Have you had an unsuccessful neurostim trial?

Posted By : Ides - 12/7/2008 5:23 PM
Which limbs have neuropathy? Legs, arms, or both? Do you have large fiber neuropathy or small fiber neuropathy? And have they done EVERY test possible to look for a cause? It does seem that you are quite young to develop neuropathy without some underlying disease. My neuropathy was caused by my Crohn's disease.

I have neuropathy in both feet and up midcalf in my left leg. I have same fiber neuropathy. I take a combination of Neurontin and Tramadol to control my pain. You are on quite a small dose of Neurontin. Have they tried increasing that to see if you get better relief? Also, did the Lyrica help with the pain better and if so, why can't you go back on it?

Sorry to ask so many questions. Anyway, I take 600 mg of neurontin and 50-75 mgs of Tramadol three times a day and get quite good pain relief from that. I hope that you can find something to get you some relief.

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Posted By : blackdove1 - 12/7/2008 7:33 PM
Thanks for your response! Mu neurologist has done an EMG and nerve conduction and then ordered about 50 different blood tests, a glucose test, and an LP over the last 3 years. All were within normal range.They tested my b12 level which was low and I have an injection monthly. I take a multi vitamin, prenatal, omega 3, vit e, potassium, and magnesium daily. They tested for all auto immune disorders, celiac and lyme disease.

It started in my legs. They would burn when I walked up the stairs...burn like I just ran an marathon. Then I felt it in my hands and wrists. I mistook it for carpal tunnel, but the doctors said that it did not fit. I did not think of it as being connected until my arms started burning as well.

I cannot currently take lyrica as I am breastfeeding. All of my other medications are approved. I would love to try it again once she is weaned. I have an appt to have a skin biopsy to look for small fiber neuropathy in January as well as an appt for a sleep study.

I take a small does of neurontin as it makes me so incredibly tired. I may increase it soon as I feel that I have no choice. Thanks again!

Posted By : straydog - 12/7/2008 8:08 PM

Hi Blackdove and welcome to HW. Oh, I really hate seeing new people having to join especially young folks like you. But honey, in all reality CP can hit anyone no matter what the age. So, you are not alone in this mess as we do have young people on this forum. Ides gave you some wonderful hints as usual. I too have neuropathy in feet and hands and its awful and I can relate. hen I first was dx'd with it I was put on Cymbalta and once we got the dose correct it gave me a great deal of relief. But after a time, it lost its effectiveness with me. So, then I was placed on Lyrica and it had really helped. Yes, you are on a low dose of Neurotin and may possibly do much better if the dr would start titrating your doseage upwards.  I would certainly discuss this with my dr before moving on to a pump because there are many factors with a pump that they don't tell you, I know I am a pump patient. I must be way behind times because I would have never dreamed you could nurse a baby and be on the pain patches and percs. WOW. Pumps are usually resorted to as the last straw.

Don't be so willing to think you will never be able to do many thing with your baby. I don't think personally your dr has you totally where you need to be with meds that could possibly help you a great deal. Pain can be so debilitating but you have to hang on by a thread only if necessary and not give in and fight every day as if it were you were last. Don't give in to pain. Ita a very hard thing to choke down at times no doubt.

You just hang in there and know we are all here for you and behind you 500%. Take care and try to have a lp evening. Hugs, Susie

Posted By : PAlady - 12/7/2008 8:47 PM
Hi, Blackdove,
Like straydog, i hate seeing someone so young with pain issues, but I'm glad you've found this group. There will be others who are younger (I'm about 30 years older than you) than me, but I did want to comment on some things, especially since straydog had the same reaction. I'm surprised it's ok to breastfeed with many of the meds you're on. Neurontin is not substantially different from lyrica in its chemical make-up. And opiods, while they are necessary for you, I really thought passed into breast milk. Even if you had to forego breast feeding to get better pain management, it may well be worth it, but I'd suggest looking more closely at the effects of each of those meds. on breast feeding. If it was me, I'd google each one, go to the manufacturer's site, and read what is said about breast feeding. Usually it's a separate issue that's addressed for most medications. Maybe I'm wrong, but something doesn't seem to fit.

I wondered if you had any injury or participated in any athletic activities? Does anyone in your family have similar problerms? I'm sure you've thought of these things already. I also wonder about some type of RA or CRPS, although sometimes these are challenging to diagnose.

Others here will add much support and share experiences, I'm sure. Do try to be careful picking up the baby and other activities which may make it worse, especially until your pain is managed more effectively.

Keep the faith that there are always new treatments on the horizon.


Posted By : Tirzah - 12/7/2008 9:46 PM
Have they done an MRI yet? If not, it might be worth it to get one of both your L-Spine & your brain/C-Spine.

Maybe there's something going on with your nerves or brain. I had neuropathy in my early-mid 20's (hands only) & it was related to Arnold Chiari. I had surgery & the neuropathy was resolved within a few days. I'm not saying that's what you have, just that if you haven't had an MRI yet that it would be good to get tested because maybe there is something causing the neuropathy & it could even be that the neuropathy in your hands is not even related to the neuropathy in your feet (probably not as likely, but I've learned there are all kinds of creative ways that our bodies find to cause problems for us).

take care & congratulations on your new baby girl!

Posted By : straydog - 12/7/2008 10:50 PM
Blackdove, I am not a doctor. But, I sort of remembered about breast feeding while on the pain patches. I looked it up under Drugs.Com and read the consumer info. It states in the consumer part, if a nursing mother is on Fentanyl she should discuss alternate pain mgt because the Fentanyl is passed to the baby in the mothers milk. Your baby is getting an opiod thru your milk and she can become addicted to it, it can cause increased sleepiness and other things. Please look this information up.
I do hope you will contact your dr immediately and discuss how to handle this situation. As with any opiod, you do not just quit and the same I am sure concerning your child. I am not trying to alarm you by any means, I am just concerned for your baby. Hugs, Susie

Posted By : kttn251977 - 12/8/2008 2:40 AM
Blackdove, I am 31 & know exactly where you are at. My pain started as well in my late teens and progressed steadily until about 25 it began to interfere with every day living. At that time I was living in a different state & could not get a dr to take me seriously. I was even accused of drug seeking.... the exact words were "you are too young to be in this kind of pain" and never a test once to see if anything was really wrong. I felt like I was going crazy, there would be days I would lie in bed & just cry from the pain being too much. Then I moved to Fl, and even though I switched jobs from bartending to an office job then the shooting/burning pain & numbness in my legs/feet began to set in.I knew I had an issue then. So I went to a new PCP & he told me he could not treat me for back pain, he did prescribe soma & darvocet, but did refer me on to a pain specialist. The first day the dr came in I knew things would be better. After an onslaught of tests, I was not crazy & everything had a name. I just felt so validated. The dr is also in his mid to late 30's & suffers from CP in his back as well. So I understand the need to feel like you aren't alone at our age. It all feels so unfair. Like you have to watch every single move. I miss the simple things- rollercoasters, laundry- even walking my dogs. I unfortunatly never had the chance to have children. A big thing I wish I would have done, but I kept waiting for the right reasons, a husband, a career.... the list goes on.... I hope someday to adopt but you know how tough that can be.
As for the pain pump, we have an excellent thread started on it. Some great stuff, so check it out. I too have been all over the place with pain medication.... patches, pills, morphine er, oxycontin, methadone, percocets, norco, muscle relaxers, injections- even nerve blocks & trigger injections. I have probably been under 20 times in the past year alone with injections & nerve blocks. My dr had in the past talked a little about a pain pump & I was dead set against it. My last appt we narrowed down my morphine options, I am allergic to sulfa which he said is in about 50% of pain meds. Dilaudid was my last shot at pain pills. It had worked previously in an IV, so I had my hopes set too high. So the last visit we discussed having the pain pump installed. After reading up on it, it is actually a better choice for me. I have a lot more options as far as pain medication can go. The meds bypass your liver- so ultimatly its better for you & less medication. I also have issues with constipaion & this is supposed to help that as well. So next month I am going to get a 1-week trial to see how it goes.
So don't feel so alone. There are younger people out there who have all these pain issues. I know what it feels like to be so isolated. I wish you could take lyrica, it has been a help to me. Nothing takes it away permanently, nothing ever will. Thats a hard converation to have. I always assumed I would feel better.... that there would be a surgery or pill... its just not like that. But, I have a lot going on with my back, several ruptured discs, sciatica & an inside break on a vertebrae. I also have fibryomyalgia & the suspect MS...... I have to see another specialist to see whats going on there. So I am not going to worry about that until then.
If you need anything please feel free to talk anytime you need it. Even if I am not here, there are some wonderful people on here who can give fantastic support! You will be among friends here..... I have even told my dr about this website & how wonderful it is here. Just to , I guess like I said, feel validated. Its hard for people to understand until they are actually in our shoes..... even our drs.
Are you seeing a specialist?

RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil

Posted By : blackdove1 - 12/8/2008 11:10 AM

Thank you all for your kind words and wealth of knowledge. I am sad and glad to not be alone. kttn251977, what was your diagnosis? What test revealed it? I have had MRIs of my full spine and brain to rule out MS. The lumbar showed 2 degenerated discs at L5 and S1. No noticable nerve impingement, but a few small bulges. I see a neurologist for diagnostic purposes and a board certified neurologist with a pain management certification for pain management. I am going to go up to the U fo U in January where they specialize in PN. They will perform a skin biopsy.

PAlady, Thanks for your support.  cool   played competitive volleyball and even earned a full scholarship to play in college. All of that jumping and conditioning may have caused me some trouble. I also did fall down a flight of stairs when I was 18, and i hit EVERY single stair with my low back/ tail bone. I was in a lot of pain, but did not seek treatment as I was trying to be a tough athlete. It was very much a NO NO to be injured or in pain. Once I broke 2 ribs and my high school coach "let" me sit out for 1 day. My father and mother have back problems, but not the same type of neuropathy. I have a great aunt who had low B12 levels and pain in her legs. Thanks again!

Frances_2008, Thank you for your support! smilewinkgrin ow do they find out if it is your brain causing the pain?

straydog and others. I completely understand concerns about breastfeeding and opiods. You are all very sweet to think of my little Stella. We were completely SHOCKED when all of my doctors said that it would be ok and that I did not need to titrate and get off my meds. No one could have been more shocked than me. My husband and I were planning to have a child after the stimulator and off my meds....I know...big expectations. Unfortunately, that is not how it went. Unplanned as she was, she is the BEST. Because I was on the same meds in pregnancy, the breastfeeding really helped withdraw Stella from the exposure in the womb. We were incredibly blessed as she only spent 1 1/2 days longer in the hospital. We are doing everything we can to prevent another baby of ours from going through. I have done a lot of research, spoken with pediatricians, my pain doc, my neurologist, and have called a local hotline which many doctors use when prescribing meds to lactating or pregnant mothers many times. Everyone gave us the go ahead. Stella is thankfully showing no signs of exposure such as lethargy, lack of appettite, etc. I know that she is exposed to these drugs and the situation is less than ideal. That is another reason why I am considering options which reduce the amount of medication in my blood stream. I want more children and I am not going to go about it this way again.

As far as the trial. The stim was inserted 12/01, and they took it out on 12/05. The coverage was great in my legs and not so good in my lower back, but even in my legs, it offered little if any pain relief. My doctor said that it is either a big aha moment of relief or it isn't. If it is not immediately helpful, then it is not right for the patient. I don't know what to think about that. I know he is a very good doctor who was the first in my state to implant the devises, but for EVERY patient to have the same "OMG I feel so much better" instantly? seems like a hyperbole. shakehead

Idiopathic Peripheral Neuropathy - All-over burning, deep aching in my legs and arms (mid back down) and sharper pain in my low back and SI joints. I take 50 mcg fentanyl patch (every 48 hrs), 7.5 mg percocet 3x day, naproxyn 500 2 x day, neurontin 300 mg 3x day, and took soma 3 x day along with lyrica before I got pregnant.

I just tried the neurostimulator on 12/01, and on Friday they took the leads out and we decided it was not for me. Now I am looking into the pump....hoping to get the trial done ASAP. Any words of advice or experience with drugs that helped better than fentanyl on nerve pain? Thoughts about pain pump? Have you had an unsuccessful neurostim trial?

Posted By : kara487 - 12/8/2008 1:24 PM
Blackdove, I also have peripheral neuropathy and am only 35 years old . Mine is caused by pernicous anemia which means Im deficent in the vitamin in b12.That could be why you have peripheral neuropathy you could have it since you low in b12. I too use to get b12 shots and they told me it wouldnt correct the nerve damage you have only prevent you from getting more nerve damage that you already have. I found that lyrica helped my nerve pain alot but I can no longer can afford the b12 so now im using neurontin. I understand what you are going through. I hope you have a low pain day.

Lortab,ambien,elavil,reglan , neurontin,zyrtec and soma.
spinal conditions: Scolosis,herniated discs,spinal blockage,Spinal stenosis,bursitis ,Fibro,and arthritis

Posted By : blackdove1 - 12/9/2008 4:55 PM
You are very sweet! I am so sorry that anyone has to go through this. Is your peripheral neuropathy in your arms and legs? Thanks so much and have a low pain day as well!

Idiopathic Peripheral Neuropathy - All-over burning, deep aching in my legs and arms (mid back down) and sharper pain in my low back and SI joints. I take 50 mcg fentanyl patch (every 48 hrs), 7.5 mg percocet 3x day, naproxyn 500 2 x day, neurontin 300 mg 3x day, and took soma 3 x day along with lyrica before I got pregnant.

I just tried the neurostimulator on 12/01, and on Friday they took the leads out and we decided it was not for me. Now I am looking into the pump....hoping to get the trial done ASAP. Any words of advice or experience with drugs that helped better than fentanyl on nerve pain? Thoughts about pain pump? Have you had an unsuccessful neurostim trial?

Posted By : straydog - 12/9/2008 5:19 PM
Blackdove I have a pump and mine has been my friend since June 05. There is a post or two recent about pumps written by me, you may want to read them, I gave some info out that drs do not tell their patients.

I must admit I am totally blown away that you are allowed to breast feed, although that is so wonderful for the baby. Like I said earlier, do not set yourself up on what you can't do, try to concentrate on things you can do with the baby. Enjoy every moment with her they grow up way too fast. I have a 3 yr old grand son that is the reason I get up every day. He relies on his Granny being there for him and I plan to to make that always happen. Matter of fact I have had him all day today and I cherish my time with him, but it goes to fast. Hugs Susie

Posted By : donelson - 2/25/2016 3:24 AM
I have a young female colleague who is only 26. Her PN started about 2 years ago (2014), after she moved from Texas to Rhode Island.

It steadily got worse, and she was repeatedly tested, with a stream of doctors telling here "this was an old-person's disease" and unable to offer treatments.

In mid-January this year (2016) she got hives, which quickly got much worse, the PN got worse as well unable she was unable to feel her fingers to type, dizzy spells, nausea, shaking and uncontrollable cramps. Even more doctors were due to examine/treat her in the last week of January.

She has not replied since early Feb 2016 to emails. I realise this may be due to either a terrible worsening of her condition, or her shame and depression that her expected and deserved young adult life is ruined.

I am in tears almost every day. Support and advice would be much appreciated. I wish I could help my young friend *weeps*

Posted By : houstonhopeful - 3/1/2017 8:54 AM
Hi Donelson... did you ever find out what was going on with your young colleague?


Posted By : straydog - 3/1/2017 10:10 AM
Hi houstonhopeful, Donelson has not been back to Healing Well since the above date. When reading older threads you can click on the member's name & it will show you when they last posted. We do invite you to make a separate thread introducing yourself. People tend to not look at these threads that have not had any activity in a while. Thanks.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : donelson - 3/2/2017 4:01 AM
Dear Houstonhopeful & Straydog

Sadly, none of my friends nor I have heard from our young friend in almost a year now. We are very, very worried for her. We can only surmise that her new life with this horrific illness precludes chatting with us.

We all love her very much. She is so bright and fun and sweet. I think about her every day. Talking about her in the group does not happen much anymore, it's too painful.

None of us know what's happened to her, what her life must be like now, or her prognosis or treatment.

Thank you for your kind concern and replies.


(I originally found this forum due to my prostate cancer)

Posted By : donelson - 7/15/2017 11:26 PM
Yes, I am still here, still coping poorly with the loss of my young friend.

My prostate cancer treatment is succeeding, but side issues have kept me down (run over by a van on my bike). I am feeling somewhat stronger lately.

None of us have had any contact from our young friend in 15 months now. She was like a daughter to me. Very painful to lose someone so bright and wonderful.

Perhaps she might someday read this and find a way to let us know how she’s doing.

Michi, we’ve left your things safe as they were.

Please know Simi and Spice and I love you so much. Sherri too.
Highest PSA 37: Apr 2013, Gleason 4+3, 12/12 cores
T3a prostate and seminal vesicles
Da Vinci Nov 2013 w/Chris Ogden UK
Mar 2014 PSA 0.2, Apr PSA 0.33, many urethral problems & procedures
ADT Goserelin, started July 2014, continuing
33x IMRT started 13 May 2015, complete June 29
PSA < 0.04 since Sept 2015 "undetectable"

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