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Old 04-21-2006, 12:21 AM   #1
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Julz611 HB User
I need neuropathy support, am I being a big baby or do you feel this too?

Hello Everyone, My name is Julie, I'm 31, and I am a type 1 diabetic. I have fibromyalgia and have been diabetic since August 2004. About 5 months ago, I started experiencing tingling and itching in my feet. And over the last couple months, it has gotten out of control. I have read alot of posts about hands and feet but mine goes further and I need advice. Like I said it just started in my feet and then it started with pain and burning in my hands and feet, it hurts so bad and it feels like the little bones in my hands and feet are bruised and burning. Some days I can hardly put on socks and shoes and writing or eating is very painful. . Then a couple months ago, I started having burning, pain, numbness, and tingling in my back. Then it spread to my arms and legs. I had an EMG done a couple weeks ago and had some nerve damage in my back and neck but overall it looked as if no bad permanent damage has been done. I started on Lyrica 4 weeks ago, my doctor has been increasing my mg and I now take 1-150 mg and 1-75 mg twicw a day. But my pain is still getting worse. My skin is so sentitive and feels like I am fire. It's too sore to touch and when my clothes rub my skin, it makes it even worse. My sweating is horrible, I used to be a freeze baby and not heat is not tolerable, however, when I am in a cooler climate, I get chills so bad and the pain is even worse in the cold. I can't win and I am ready to jump out of my skin. I am looking for support on how to get relief from this horrible burning and pain. I have had fibromyalgia since I was 28 and have always been able to tolerate it, whereas, the neuropathy is taking over my life. I need to know if I am just getting worn down from all my health conditions and irritated with pain or are there other people who experience such pain and burning with their neuropathy in their back, arms, and legs too. Please help me and tell me how you feel, I will greatly appreciate it. Thank you for your time reading this.

Julie

 
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Old 04-21-2006, 10:21 PM   #2
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Tight Socks HB User
Re: I need neuropathy support, am I being a big baby or do you feel this too?

I'm a 58 yr old woman who has had pain (diagnosed as peripheral neuropathy) going on 5 yrs now. I'm a type 2 diabetic and they think that it may have been caused by being undiagnosed as diabetic till just after the pain began. It is in both feet up to above my ankles and burns like fire when time for a pill, but has gradually narrowed down to what feels like one long nerve on the outside of my right foot. Both feet burn when it gets bad though. I was up to 4500 mg a day of neurontin, if you can believe, but stopped and now take 150 mg of Lyrica 5 times a day, which works pretty well. I don't feel as tired form Lyrica and 5 pills is so much better than 15 a day, which always stuck in my throat. It's a real bummer, this constant campanion (pain), but what can you do? I just pray that it doesn't spread any further. That's my real fear. I work full time and spend a large part of my day on my feet so I just crash when I get home. It's hard to explain to others just how bad the pain gets, especially when outwardly we look just fine. It's a big problem, I've found. One thing I've found out is that it works much better to take a pill as soon as I can when the pain stars to return real bad because once I have it, it's so much harder and it takes much longer to bring it back under control. I am sorry that you are suffering so much and hope things improve. This site is a good thing to visit to commiserate with others with like experiences.

 
Old 04-23-2006, 02:08 PM   #3
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Re: I need neuropathy support, am I being a big baby or do you feel this too?

Hi julie , I'm also new here , I have neuropathy due to ruptured discs in my neck that permanently damaged the nerves throughout my upper back & neck.It is now going on 15 years since I fell and did this. I'm slowly losing the feeling in my hands the burning is unbelievable, so no you are not a big baby. I very much understand what you mean by It hurts to wear socks because it hurts 4 me to sit back against anything, even a pillow. So sleeping is out of the question I can't lay on either side because they go numb within minutes. On top of that after mt last cervical operation my migraines went to 3 to 4 a week. I take oodles of meds that keep me in a fog. I'm not allowed to lift more then 5 lbs. so therapy is limited. I do have two good Docs that I do trust but it took along time to find them. My pc & my orthopedic. My new neuroligist is pretty good I have only been to him 3 times so the verdicts not in yet. He specializes in migraines. I'm really sorry this is wearing you out! I totally get I'm never lower then a 7 on that blasted pain scale . Other then lyrica do they give you anything for pain. I was on lyrica but insurance won't allow it because i'm not diabetic and it would known as off lable use so I have to appeal it. I also tried neuortin with bad side effects so I had to stop. But for pain I have oxycontin, endocet for break through pain. maybe you can talk to your doc, let him know how much pain your in. You should not suffer! Good Luck!!!!
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Old 04-25-2006, 11:20 PM   #4
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Re: I need neuropathy support, am I being a big baby or do you feel this too?

I'm really surprised none of your doctors has done an intracellular magnesium test. This could be the main cause of all of your problems. It CANNOT be just a serum magnesium test, but must be intracellular. You might want to search (seelig low magnesium) then type in your ailment after the word magnesium. Dr. Mildred Seelig is the world's foremost magnesium expert.

 
Old 04-28-2006, 08:14 AM   #5
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Re: I need neuropathy support, am I being a big baby or do you feel this too?

You're not being a baby, some people need support.

I have had slow progressing neuropathy for aboout 10 years and no diabetes. Your condition sounds like mine but much worst.

I went to a neurologist 7 years ago who didn't know what to do so he treated me with voodoo. I went to another one two years ago who said 'you have neuropathy, what do you want me to do?'
Last December I went to another neurologist who seemed locked into researching my condition with very expensive tests and no cure except more vitamins that I am already taking.
BTW - I had the worst conduction test he had ever seen and could not understand how I was walking. I told him 'the pain', that is how I know where my feet are...... he wanted to give me something for the pain!

My self healing approach includes many vitamins. The latest help is vitamin b-12 shots I give myself @ 500mcgs a week. It does seem to mellow out the pain.
I love aspirin and believe there is an inflamation component in my neuropathy. I am already on a blood thinner so I can't take aspirin so my next appointment with the doctor is to get a cheap anti-inflammatory drug to test. I already take some herbs that deal with inflamation.
I have found carnitine (ALC) to help with the pain but jurys still out on this one since I am uping the dosage slowly because it plays with my high BP.

I realize it took 10 years to get here and any 'cure' or aid will take years to tell me if it is working.

After so many years of living with this and observing my reactions to everything I think neuropathy is strongly linked to inflamation and to sugar. Or to genetics as in CMT syndrome.
In your case with the sugar connection that's a no brainer. However there seems to be a condition triggered by the diabetes in your case and unknown in others without diabetes that disrupts normal nerve health. I am sure there is a health condition unrecognized by doctors that is a non-diabetec reaction to sugar and high sugar consumption.

I would suggest taking all the vitamins and herbs you can find that supports the nerves and it's myelin. Keep active to allow the brain to reprogram control of your motor nerves.

BTW - just a thought - my condition started sometime around my first fluoride treatment from a dentist. I had 2-3 before I confirmed a real reaction to the treatments. We all get a daily dose of this neuro-toxin in our tooth paste, and water in some cities.

Good luck with your battle. We are all different yet fighting the same enemy.

 
Old 05-16-2006, 02:25 PM   #6
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Re: I need neuropathy support, am I being a big baby or do you feel this too?

WOW. For the longest time I thought I was the only person with this unexplainable pain. It saddens me to hear of every ones health problems. Sadly, at the same time it's oddly comforting to hear. I am 28 and have been suffering from severe pain in my arms and hands for several years now. It started off mild but today, by the end of the day I am usually in tears. I have been to every specialist under the sun and there is nothing wrong with me that they know about. my latest venture was with an alternative health professional, one of the best in the country who happens to practice in my city. i have been relieved of my migraine headaches by eliminating grains and most sugar from my diet but i still have problems with my hands. i've discussed quitting my job with my husband because being at the computer aggrivates my pain but financially i have to work and i carry my own health insurance since he is self-employed. i think the thing that saddens me the most is i haven't had children yet and probably won't because at the end of the day, i wouldn't be able to pick them up for a hug. and who knows what the stress of pregnancy would do to my existing symptoms let alone new ones that would appear. i'll definitely be checking in with this board to read about any new treatments that sound promising. i don't take any perscription drugs as that is most likely what got me in this situation to begin with (atleast according to the alternative health doctor) but any natural solutions will be greatly appreciated. Thank you for sharing your stories with others so we don't feel so isolated and I wish you all the best!
~alamaz~

 
Old 05-16-2006, 04:05 PM   #7
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Exclamation Re: I need neuropathy support, am I being a big baby or do you feel this too?

I have been diagnosed with Femoral Neuropathy in my left leg... according to my neurologist it is due to radiation damage from my cervical cancer 14 1/2 years ago. My whole neuropathy started with numbing pain that started in my lower leg ( just above my ankle ) and it has within this year crept its way all the way up to my groin. The doctor says it takes about 10 or more years for this condition to show up ( however my Oncologist says that my neurologist is just looking for something to blame this on....) I have not talked to anyone else who has this condition due to " radiation damage " or due to anything else..... all I know is that I am on methadose (a generic for methadone.... twice a day/ can be up to 4x's a day as needed ) Hydrocodone---usually twice a day/ can be used every 4 hours as needed. Coumadin--- has been cut to every other day because protin level was getting too high, and Gabapentin--3x's a day for pain. I started off a year ago by walking fairly normally, but as the pain has progressed and the numbness has worked its way up..... I am now walking with a cane and have just been fitted for a brace that goes from my thigh to my foot with a orthopedic shoe that fits into it ( due to the fact that I kept falling due to lack of feeling in my leg and my knee would just " go out from under me "). Your NOT being a baby.... we need to keep our chins up and support each other... I am just as much of a baby as you, I am 42 and DONT want to be disabled for the rest of my life.... please be there for me and I will try to be there for you..
Laurie C.
Columbus, Indiana and

 
Old 05-17-2006, 06:40 AM   #8
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Captain Colon HB User
Re: I need neuropathy support, am I being a big baby or do you feel this too?

As everyone has already said, you're not being a baby at all.

I fractured my left femur in a motorcycle accident. At the scene I was asked to wiggle my toes. Sure, no problem. Fast-forward to after surgery...can't move my toes anymore. Can't move my foot either. Eh, no big deal, I'm sure it'll come back after a few weeks.
About a week and a half later the nerve pain starts in my foot...absolutely unbearable. I went from star patient to complaining constantly about pain. At times it was bad enough to drive me to tears, I had no idea it was even possible to be in this much pain.
A few days after my discharge I went to the ER to get something weird in my stitches checked out. I mentioned the nerve pain and asked if I could try neurontin or lyrica. The ER doc gave me a week-long prescription of lyrica 75mg 2x/day. By the fifth day, I went most of the day completely forgetting about my pain, it was wonderful. Unfortunately I ran out of pills on a friday night, so I had to go the whole weekend without it. I was in tears constantly, moaning about just wanting to die. It was awful, the only way I could get any sleep was by taking a few tablets of benadryl and a shot or two of liquor with it.
Had an EMG done yesterday...I could tell the doctor was trying to find a way to put it lightly, but all he could say was "well, the prognosis is...not good." I have no motor nerve activity whatsoever anywhere below the knee. Quad and hamstring activity are good so I'll be able to walk again, but I'll have to use a cane and wear a big ol' brace for my foot so I don't break it by accidentally stepping wrong. There's a small chance that it's just an injury to the myelin sheath that's taking longer than normal to heal, but at this point it seems pretty unlikely. Possibly a nerve graft would be able to restore some function, but I'm not sure if I want to deal with any more surgery and "bed rest only" periods, and as far as I know nerve grafting usually requires some minor follow-up surgery. Or possibly the nerves will grow back on their own in 2-3 years (one inch a month, all the way down the leg), who knows.

If anyone ever tells you to suck it up and deal with it, ask them how they'd feel about having constant debilitating pain. Ask them how they'd feel about having to wear an ankle brace and orthopedic shoe for the rest of their life. I had no problem dealing with my broken leg, but learning I might never walk normally again has been slightly more difficult to accept. Not to mention all the follow-up appts totally screwed my plans of spending the summer with my girlfriend, who I'm afraid might get tired of me and my footwear

Just remember that everyone with this condition supports you

 
Old 05-19-2006, 05:53 PM   #9
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countrykid HB User
Re: I need neuropathy support, am I being a big baby or do you feel this too?

I do not have Neuropathy but my husband has it. He has Diabetic Neuropathy. He is a big strong man but this condition has brought out the little boy in him. I don't mean to make it sound like he is a baby but the pain he suffers is unbearable for him. He becomes depressed and angry. There are days where he is in so much pain all he wants to do is sleep the day away. That's if the pain will let him get any sleep. If he can't get the sleep he sneaks one of my "strong" pain killlers. He had been treated by the PC with amitrypaline (sp?) but that didn't help at all. And it didn't help his moods. He is now seeing a neurologist and having more tests (EMG). He has started a regiment of Lyrica. But that isn't doing any good either yet. So of course he needs as much support as our family and freinds can give him.
So my thoughts are anyone suffering with any medical condition needs all the support and love their freinds and family can give them. And if freinds and possible significant others can not be supportive they don't need to be in your life!

 
Old 05-19-2006, 07:32 PM   #10
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Re: I need neuropathy support, am I being a big baby or do you feel this too?

I have been getting relief taking benfotiamine . It has helped quite a bit with the pain , the numbness is still there but the pain has subsided quite a bit since starting this . Take 4 capsules a day , 2in the morning and 2 at night . Do a google on benfotiamine and read about it ... It may or may not help you , if you try it give it at least 2 months to see if it will help you ...

 
Old 05-23-2006, 01:25 PM   #11
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Re: I need neuropathy support, am I being a big baby or do you feel this too?

Hi Julie!

I'm a "Julie" too! (and originally from Cleveland! How bout that?)

Anyways, long story short - I have had diabetic neuropathy for 17 years (I am 44) It has gotten progressively worse even though my type 2 diabetes is unofficially "reversed" ! (gastric bypass 2004!)

NO you are NOT a baby!!!!!!!!!!!!!!!! I also experience those SAME problems DAILY. The burning, the itching, the freezing, the sensitivity. It is mainly in my feet, although I also have restless leg syndrome and rheumatoid arthritis symptoms.

I take cymbalta (maxed on 120 mg daily for the last 4 yrs), lyrica 300mg a day (and YES they both help ALOT, you should give them a chance if you are prescribed them, you'd be surprised how they cantake the edge off the pain) I don't very often get the sensitivity anymore like I used to! That's a big deal. The burning/freezing is almost bearable. But I also see a pain management specialist who GOD BLESS HIM doesn't believe in suffering! I take 4-6 norco (hydrocodone 10/325) a day for pain.

It works. I am able to work full time, sleep at night and take care of my 5 yr old, my teenage girl, my home my hubby and HAVE A LIFE!!!!!!!!!!!!!!!!!!!!!!!!

Don't hesitate, there's help out there, you just have to find it!!!!!!!!!!!!!!!

Love and best wishes
Julie in Phoenix

 
Old 07-06-2006, 05:03 PM   #12
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Re: I need neuropathy support, am I being a big baby or do you feel this too?

Dear Friends,

I am in so overwhelmed right now. I went from happy to sad and cried my eyes out reading your heartfelt replies. THANK YOU ALL SO MUCH. Words cannot express the emotions I am feeling now. Since, my original post I have been diagnosed with POTS (Postual Orthostatic Tachycardia Sydrome, a rare heart disease). It started with very bad dizzy spells that can last hours. My heart rate goes up to 120-150 beat a minute and my legs get so weak and I lose my equalibrium (sp?). It is very scary because you can black out and it happens mostly in the morning when I get out of bed because I'm laying flat all night but he suggested I put a few bricks under the mattress. But back to the nueropathy. My lyrica was increased today to 150 mg 4 times a day. It really does help but only at about 50% right now and boy do I suffer if I forget. I do take hydrocodeone for pain and today I got the new Ultram ER, I will keep you all posted if it works. My post is long but I want to reply to all of you as you have all touched me so much. I'm sorry it took so long but I was in the hospital a couple times in May with Ketoasidosis and have been really under the weather.

First let me say, I have just said a prayer for all of you. For you and your family and friends. I pray for all of us to take one day at a time and make the most of it. I pray that when you are feeling down that God will send some sunshine into your hearts. I pray for healing and for all of you to know that when you are down to think of me and smile that you made today a very happy day for me. God Bless You.

Tight socks - I totally get how you can feel alone and feel as if no one undertands. I have a handicap sticker and the looks I get, I could spit fire at these people. Years ago, I admit I've seen people with them and get out looking normal, I have a whole new outlook and smile at everyone I can make eye contact with because somewhere I know they are hurting inside. I have never tried nuerontin but I am so glad the lyrica is helping you.

justfine - I have been wearing diabetic circulatory socks that come to my knees. It really helps with the tingling and especially helps with my POTS. Now thats its summer it can be hotter for me but its something that I need to wear. I now wear all sleeveless shirts and chopped about 8 inches off my hair last friday. I have a cute new short hairstyle that I love. I now dont have to deal with extra pain when my hair would brush my arms are back. Growing up my Grandpa asked my mom to keep my hair short so she did. He called me his little Pixie. Since my teens, my hair has been to the middle of my back and my Mom said to me the other day... Grandpa is smiling down from heaven. It made my day. I too suffer very bad from migraines and have lost months of my life being in bed for days. Vomitting so bad that I have been to the ER at least 20 times to get it to stop. I'm in a migraine study and had surgery last may. I went from 20 days a month of migraines to about 3-4 and it has given me many more days to be thankful for. I pray the FDA will approve the procedure because the medications are so outrageous overpriced but we would and I have paid any price (28.00 a pill) to get rid of it. The study is threw Dr. Guyaron at the American Migraine Center in Beachwood, Ohio if you are interested in reading about the procedure.

finres - I have been doing some reading on those tests and will definately ask my doctor about it. Thank you.

suggus - OH MY GOSH AM I SICK OF PILLS. I get so frustated because over the years my doctors just said take this and take that and tell me if it helps. My last pain clinic doctor alone tried to give me 11 pills a day, 2 pain patches, and ordered a tens unit and muscle stimulator that I was to wear 11 hours during awake hours. Add 6 shots of insulin and 8 other pills for my other problems. I was so overwhelmed and so fatigued, I just went off of all them except the lyrica and felt much much better. I had three alarms set in my bedroom a couple months ago and would sleep through all of them. Now that is scary. I am hoping the ultram er, hydrocodone, and lyrica will fight my pain. My fiance is really pushing me to take vitamins, so I am going to at least get something like Centrum One-A-Day.

alamaz - Where do I begin, sweetie. I totally understand where your heart is. My endocrynolgist told me last last summer that if I wanted a baby that me and my fiance should start trying. So that we did at the end of last October. On December 18th, I found out I was pregnant. 6 days prior, it was a bad snowstorm and my car slid under a school bus. I wasn't hurt, just very sore. I was so scared for the baby. It was my first pregnancy and we didn't wait, we just had to tell everyone we were so excited. During January, I had the worst morning/all day sickness and my blood sugar was out of control. I had many readings from 400 - 600+? Thats as high as my meter goes. I double/ tripled my insulin but i still couldn't fight the battle. I was in the hospital for my 4th time when I miscarried Febuary 1st. With all of my problems, I will never know what caused me to miscarry. Healthy women miscarry, I just have to believe my Baby is in heaven. My heart is still empty and sad. I was constantly thinking will I get through this pregnancy, will I be able to carry the baby with those heavy carseats on my own, take my child out to play, etc. I know deep inside no matter what it takes I will have a baby and I will do all the things I want to give to my child because that is what I have dreamed of my whole life. My fiance is wonderful and what I might lack in, he will do for me. If I can't take my baby down a slide at least I know I will be standing at the bottom to take the picture I was into volleyball and sports and was always on the go before I got sick in 2001. I was devastated and bored but I found things I could do sitting. Wordburning, ceramics, playing online poker, etc. It keeps me busy but I still miss my active life and probably always will. Hopefully by the end of this year with an okay from my docs we are going to try again but I will be much more prepared. Please don't hold back your dreams. Moms say that you don't know love till you have a child and you can do anything. You can too. Whatever it takes you will be a wonderful mommy someday and your baby will love you so much that if you can't play catch one day, he/she or they will understand. We can do it, deal?

Laurie C. - I feel some days, a cane would be a huge help. I feel I will need one someday too soon. It scares me and though I don't know your frustation, I am praying you. You beat cancer and Gods plan kept you here, a true miracle. You can beat this too, I have faith. Its hard to keep going some days but we all have to find our own way of coping, and I am always here if you need to vent.

Captain Colon - Your words really hit hard. I do have a wonderful fiance but I often get scared and worried he will leave me too. I think he'll get sick of missing out on things in his life and our life together, sick of taking care of me, because I am so limited to what I can do. The guilt eats away at your insides and you want so bad to the things that they dream of or the the things you dream of doing for them. On one of my good days, I think okay I'm feeling better, I'll try to take a small walk in the woods and take a picnic but the next you can't even move. It is scary and it is hard. At first when I read your post I thought, wow, a guy admitting to crying from pain, and my heart sank. Then, as I thought about your reply even more, I realized, this is a guy who is true to himself and your girlfriend must be so proud. I think God has sent us angels, and if he has, they aren't going anywhere.

Countrykid - I get very moody too and I understand what your husband goes through. He is very lucky to have you and your support. When I get grumpy and angry for what my life has become, my fiance just hugs and kisses me, says kind words. Even at the time, I might now feel better because I am in self pity, I always feel so guilty later. He is the one who is there for me always, the rough nights, etc. And I hate that he sees me like that but I love that he doesn't hold it against me. I am one lucky woman and you are one special one. Even though I a stranger, I thank you for being so wonderful for him. I recently lost a good friend of 10 years because he got mad I had to cancel plans with him a couple times this year. It is breaking my heart but he doesnt understand and I don't feel I need to beg his forgiveness, hes been around enough to see what I go through, so AMEN to your comment!

vipergg22 - Thank you. I will definately start reading into that tonight.

Please see next to continue it was too long. Sorry.

 
Old 07-06-2006, 05:04 PM   #13
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Julz611 HB User
Re: I need neuropathy support, am I being a big baby or do you feel this too?

And last but not least, JuJuBeee. I was a jujube growing up too. Most of my cousins and my Mom called me that. Some still do lol. Way to go for the bypass. That is just awesome! I was give cybalta but never gave it a chance, I am going to now. I will keep you posted on the effect for me. My new pain clinic doctor cut my hydrocodone to 2 day now along with the Ultram ER. I told him I felt much better when I just took 4 750/7.5 hydrcodone than I did with all the other crap and patches. I told him I would give it a try for 5 days and he agreed if it doesn't help he will take me off the ultram and just let me take the vicodin. Can I come live with you so I can see your doctor lol. Cause I sure can't find a sympathedic one here. I wish pain doctors had to have pain too because they would have a whole new outlook on their patients. And I get so frustrated that I feel like I have to beg for pain relief. I expressed I need to get back to work full time because when I lost the baby in Feb. my fiances boss fired him for taking 3 days off while I was in the hospital. What a jerk so I feel we are still playing catch up. Not to mention, my sister and I have a mortgage company and the guilt of not working as much is hurting me so bad inside. I feel I am letting her down even though she would never say I was. I am really blessed with my support group, Brian (my fiance), my sister (who lives next door with my 2 beautiful nieces that wipe away any pain with a smile and hug) and my Mom who listens to me cry and just listens when I need her. My sister and I bought lots next to eachother last summer. Her house is almost done and I haven't even broke ground. She'll be moving soon and It will break my heart not to see my nieces every day, they give me so much sunshine. Please Put me on your buddy list so we can keep in touch.

Thank you again to everyone and I will be here if you ever need me. Sorry for the book but I feel for each of you and I wish there was a way we could have a chat conference once every couple weeks. I don't know if we can set it up here but if not we can do it on yahoo. I'll set it up. Please let me know if you are interested.

Love and Hugs,
Julie

 
Old 07-09-2006, 03:14 PM   #14
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Sherrysham HB User
Re: I need neuropathy support, am I being a big baby or do you feel this too?

Sorry to be late jumping in to reply here; don't get online but every few days. NOOOO WAY are you being a baby!! Pain is real and it's a VERY EVIL MASTER that all of us here serve, unwillingly, I might add!! No one can truly measure pain, and don't let *ANYONE* get into a "my pain is worse than your pain" debate with you!!! This is NOT a contest and there is NO PRIZE WINNER!!!! You will find as you go on with this disease and it's torture, there will be those who want to make a 'contest' out of pain and prove that theirs in worse than yours, etc.......unfortunately, sometimes even closest friends and family!

I can't recall for sure when my PN was diagnosed; think it was 7 or 8 years ago. Also have Migraines from time to time and the best form of 'preventive' I've ever tried for them is taking "Topomax", an anti-seizure; might be worth looking into if you've not already explored that angle. Also, when a headache does occur despite the Topomax, I take a generic version of "Midrin" and it works well for **me**. Other miseries I suffer with are Classic Interstitial Cystitis (auto-immune bladder disease in which the bladder walls are covered with scabbing/bleeding sores), Arachnoiditis (damage to 1 of the 3 layers of spinal cord), Ruptured Disc @ L5-S1, DDD, Severe degree Arthritis in both feet, both ankles, both knees, Chronic Myofascial Pain Syndrome, Severe Muscle spasticity, Severe Degree Osteoporosis, Chronic Kidney stones and that's the top malodies. So, yep, I am no stranger to pain.

Neuropathy has SOOOO many vicious symptoms, and they can vary widely within the same person, in the same day!! Mine began with lots of burning in the feet, but QUICKLY advanced to SEVERE burning/tingling/numbness, all the way up to the knees. Before I knew it, this was also happening in the hands and arms, and somewhat in the chest and face, and now the very bottom portion only of my left buttock (how weird is this??). Thanks to my own serious stubborness, I've caused the Neuropathy to become VERY, VERY, INTENSELY angry and painful. Due to serious foot problems, I was sternly warned years ago NOT to take up walking as exercise, but did anyway. Even though my feet began hurting a few months ago from doing so, I persued on. Once the feet started hurting, the Neuropathy just jumped aboard with, "Hey, let's hop in here and stir up as much trouble as we can too!!" Life has been more torture than I EVER, EVER thought truly possible for the last few months. Those who have never experienced nerve pain, have really never dealt with *real* pain, Huh???

Thank goodness you now have more medications and another diagnosis with which to do battle against the Neuropathy! EVERTYTHING you can add on your side is beneficial, even when it's friends and support!! People who do not have pain and suffering in their everyday life will NOT understand - even IF they try to - because this is the type of life you have to LIVE to understand!!! You do what you have to do, to get through each day!!! If that means you have to put your feet on ice/legs under ice packs one hour, and under the heating pad the next hour, so be it!! Besides your medications, learn what other things might help as in ice packs, braces, ace bandages, canes, arch supports for shoes, a variety of types of shoes, a variety of types of pillows for propping up legs/feet, etc. The main thing is that you find a Dr. that is willing to work WITH you in finding the best forms of treatment........**INCLUDING** pain relief!!! Any Dr. that does not include pain relief as a treatment of dealing with severe Neuropathy needs to turn in his license!!!!! Surround yourself with support, even if that has to be 'online support' (that's where ALL my support comes from!!). And KNOW you are NOT alone, and you are NOT giving in or being a baby!!!

Take care,
Sherry

 
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