Chronic Nerve Pain & Fatigue

[Michele_R]

I was diagnosed with MS 2 months before my 30th birthday, Sept. 2002. Since then, my MS really hasnt been that bad but, my symptoms keep me from working & doing daily activities. I do not take the ABC injections as of now. I have refused them at this point. Personal choice. I have chronic nerve pain in my right leg, disk buldge in lower back, siatic nerve pain in right hip. I have tried many medications from my doctor including Cymbalta, Skelaxin, Vicodine, Percocet, Darvocet, ect. Nothing seems to work or I am allergic to it (vicodine, percocet). Then on top of that I have chronic fatigue. I have tried Provigil, Amentidine, & even Ritalin (tablet & capsul). Neither of these worked either. I am loseing sleep because of the nerve pain & causes me to be more fatigued. My thyroid have been checked & is normal. I have even tried yoga & ta chi.  Any suggestions would be greatly appeciated. Thank you.

[fairymaid]

ps i forgot to mention that the nerve pain is in my hands and the back of my right hand and in my legs and feet to my toes i just get rotating pain.. I always said that the screws and staples played a part on me with the shock feelings and trying to stretch sometimes. the guy who did my surgery did offer to do another operation but said it would be big to remove them all. i have never taken to any form of cheap jewellery i even had a titanium belly piercing in and that got infected. so who knows! But i know i dont think i will ever be 100% again and my job is down the pan and like you ppl look at me cos i am 5ft 1  size 8 and look very well i just talk  looney at minute and everyone thinks i had a drink . i WISH i would love to have a good party...i can do parties if ok on pills and dance even but i dooooooooo suffer for about 3 days after and i know its not cos am not fit cos i am very energetic until all this happend xx ooohhhhh i feeelsuch a whinger i do apologise everyone and michelle lol xxxx

[fairymaid]

Hi there can i just try tell you my story as best i can..and i really do take ma hat off to ya and omg I have not been diagnosed with MS and keep thinking they are avoiding it as i know i have everthing except incontinence (only on coughing and jumping around) anyway at moment docs think i have had a bulged disc..i am self -employed cleaner and have not done it for a year had to pay some one andmy daughter does it for peanuts to help me as she normally works abroad for months on end.
I had hernia operation (2nd one) 2010 and i knew something was wrong after when i said the pain would not go away.. i ended when i got home stuck in bed for near on 3 wks not able to stand or get dressed bathed etc, rushed in to A&E only left for 9hrs unattended to even the Ambulance drivers were disgusted at the time as they kept coming back to say hello. After all that i was admitted a doctor came asked thousands of Q's to which i was getting P****d off at cos as if i was nothing wrong, i signed myself out! I then got Xrays, Ct scan, Blood tests and nothing, so my doctos fed me with pills. I was then taken back into hospital opend up to find a nerve wrapped around a screw!! this relieved some pain, but i after then felt as if i had a rite good kicking in ribs and back (had back pain 22yrs) i then got Sciatic in both legs would be one or the other, then i did my neck twice in one month which caused more nerve damage, i have had speech problems not even getting a word or sentence, then it went to my hands and is still ther today which i cannot write at all sometimes or use my txting left hand, typing can get tiresome, I am fatigue all time, headaches and back of my head constant headachy feeling my legs i cant walk far am out of breath and tired and this has alll happend in the past year! wk after wk i get new symptoms and i put inmy symptoms and this is what i came up with..they seem to thinkBulging disc but no results from MRI yet, sometimes sight wise few seconds before clear focusing. I am frustated to the max with it all as no answers. I have had amitryptiline (tiredness a lot) changed to Neurontin (made me ill and lie down all time) back to amitryptiline speech problems thats when they wanted MRI and now i am on Lyrci 50mg as they say last resort..they say speech not connecting to neck pain, but *** me its not just neck, its moved and travelled to other areas immobilising me to work..I was such a happy go lucky bounce on trampolines mum anything for a laugh to a bit of a tired cant be bothered mum as i sometimes cannot drive..I push myself and then i am laid up for whole days whend doing chores..what is wrong with me i really think they just wont tell me i have got it i cant think of anything else and have done a lot of internet searching and allll come up with the same thing...I am lucky however in terms of a supporting hubby, he works all day and does everything at home and waits on me hand a foot ..

[COBOB]

There are several folks that use medical marijuana on this forum.  I use a vaporizer.  While it is still a Schedule 1 controlled substance under US federal law, it is a constitutionally guaranteed right for residents of Colorado to access medical marijuana.  Colorado residents with a medical marijuana registry card can walk into any medical marijuana center in the state and buy "medicine."   Not hard to do since there are more medical marijuana centers in Denver than there are Starbuck's stores.

Bob

[tan01]

I have nerve pain caused by ruptured discs in my neck, as well as spurs.  My pain goes down both arms and up into my head.  It can be excruciating.  I am unable to take typical pain meds because they either make me sleep for hours and hours or they make me very nauseous.  I have found something that helps with the nerve pain, as well as with sleep.  Be warned, it's not a popular choice, nor a decision I made easily - I smoke marijuana.  Not often...only when my pain is severe, like maybe once or twice a week.
I had fusion in May 2010 and for several months, I had very little pain.  During that time, I took ibuprofen.  Now that my pain is back, I am smoking again.  It does not make the pain go away, but it dulls it quite a bit.
I am not saying this will work for everyone, just research it and see.  I was so desparate I would have tried anything, so when a friend made this suggestion, I did extensive research and found it is not addictive and has some great benefits.
If you're hurting as bad as I have and occasionally still do, it might help.  But it is not legal - keep that in mind!

[Lulu54]

Hi Michele,
I want to back up a bit here and point out that perhaps now is the time to think about getting on one of the CRAB DMD's.  You say a couple years ago you made the decision to not take any of them  .  You have essentially gambled that the symptoms are not going to bother you.  And now, you have neurologic pain that is not responding.  

Please stop and rethink your decision - you may still be able to slow down the progression of the MS symptoms if you start a CRAB.  You will never know if you don't at least try.  

The concensus here is given the chance, everyone dx'd with MS should try one of the CRAB's -  a few can't tolerate them, but have at least tried.  Even our Limbolanders with CIS want to be on these now.  

Please for your sake, reconsider your decision.  If finances are part of the problem, your doctor can discuss the available financial assitance from all of the mfgs.  I believe Rebif does free treatment for all of its new patients for the first year.  

my best,
Lulu

[Michele_R]

Thanks. I will look into it. I use Active On alot fo help with the pain but, it doesnt go deep enough or last long enough to take care of all of it. Also, if used too much, it can dry out your skin.

Right now, I have an abscessed tooth & the pain is like no other. Trying home remedys like garlic vitamins & clove oil. Cant afford the dentist. I swear, if it isnt one thing, its another!

[Pete_E]

You might try an over the counter product called Neuragen PN.  It's about the only thing I have found that gives temporary relief of that sunburn type sensation of the skin.  The product also claims to address stabbing type pains as well.

It's a little pricey and you better like the smell of lavender because it is pretty intense...but a small price to pay if you can get back to some normal activities.

-Pete

[Michele_R]

Update on the meds.

The muscle relaxer & anti-seasure meds make me zone out like a drooling idiot lol. The vicodine doesnt take away pain & the ambien,. I havent tried yet. Kinda scared to. Heard it would make me feel loopy & drugged up. I have a life to live & cant be like that on a reg basis. *sigh* I need a miricle drug that takes away the pain & gives me energy, plus doesnt make me gain weight or feel all loopy!!! Am I asking for too much??? LOL :)

[Mand125]

Hi Michele

Good luck with the meds, I really hope they give you some relief.

I saw what you said a little earlier in the thread about the Wii Fit. My MS nurse said that it can be very helpful for helping balance.

I am so sorry that you had such a hard time when you were diagnosed, it sounds like yuo have managed to pick yourself up.

You have probably already realised that this forum is a great place to be.

Mand

[Michele_R]

I had my appointment yesterday with the pain mangment doctor. Had to wait an hour to see him but, during that time I met some amazing people in the waiting room that are in similar situations. The doctor put me on 4 med's. Robaxin/Methocarbam - muscle relaxer, Vicodin/Hydroco - pain, Neurontin/Gabapentin, anti-seziour, also boots brain function & memeory & helps with nerve pain, & then Ambien/Zolpidem to help me sleep. I will start taking them after my breakfast here in a lil bit. He also wants me to go in & get a shot in my hip for that inflamation. He said they could sedate me. I have a HUGE fear of needles!!! I would have to get it done every 6 - 8 weeks till it healed. Its something I will prob not be doing! lol All doctors seem to think Im a pin cushion. :)  I am doing a walk for diabetes tomrrow for my mother in law & my MS walk on May 2nd. So, hopefully it will help with the pain for afterwards.

I will keep you updated on how the meds do for me. I appreciate all the support & advice! God bless you all!!! (((HUGS)))

[Udkas]

Hi,
I can relate, I get lots of nerve pain, l would list it as my most troubling symptom.  I think if you do a search on med help you will bring up my question, chronic nerve pain and peoples answers to me, I found them helpful.

I am taking Gabapentin and have recently increased my dose with my Drs permission and I have found that it has helped greatly.  I don't have any side affects from the Gabapentin.  I stagger started it (slowly increased the dose), and when I think I don't need it I do the same to stop it but at the moment can't live without it.

I know it is really hard to relax with nerve pain but I know the more uptight I become about it the worse it was, try and find something when the pain is bad that you enjoy doing and hopefully that will help you relax, I like riding horses and of late haven't been riding as I just haven't felt up to it but I go out and brush them etc.and I think that relaxes me and gives me another focus, not sure if my symptoms are actually any better but I am focusing on something I enjoy.  Recently I tried a professional massage but I hated that as I have some spots that seem sensitive to touch, a bad move.

Good luck with it all, I hope that it passes or you can find a way to manage it better.
Cheers,
Udkas.

[sllowe]

Michelle!

Welcome BAck Michelle! And, thanks for letting us in on how you came to dx and how you are coping.

Do tell us how your appt. goes!

See you around!

[Michele_R]

I have had symptoms my whole life. But, always diagnosed as something else. In Sept of 2002 I started gettin a pain in my right eye with a lil fuzzy spot in my vision. I figured it was just an allergy or I may have scratched my eye removing my contacts. The pain  kept getting worse so, I went to see an eye doctor. He said he had seen it b4 & that I might have MS. Then asked if i knew what that was. To which I replied "oh yeah thats like Jerry's Kids." He gave me a dirty look & said no & tired to explain it. Set me up with a eye specialist that day. So, I went down to see this other doc. He did his test & set me up for an MRI 2 days later. After all that I got a phone call from this great ****** eye specialist while I was at work tellins me "its confirmed u have MS. You need to call ur family doc & pack a bag. The injections they will give u to slow down ur progression will most likely make u go insane bc u have delt with depression in the past." At this point I dont really remember much other than haveing one of the biggest nervous break downs I have ever had. I call my husband at the time & he tells me I should just stay at work to keep my mind off of it. I was selling cars & we was slow. I went home. As soon as I came in the door all he did was continue to build the deck on our brand new house. Didnt even phase him that my whole world juts ended in my eyes. My mom came over & took me to the doc's. He told me that the eye specialist was an *** & to not worry. He set me up with a neuro. The neuro he set me up with wasnt ne better. But did confirm that I had MS & that there are 7 white spots on my scan. When I got home I showed my husband my MRI & all of what the doctor told me. I told him all about MS & what it might do to me. He then acted a fool & went off on me like I was gonan **** up his whole life bc of this & ended up hitting me durring the arguement. He moved into spare room. Started cheating on me & divorced me for her in may of 2003. Bitter? Yes VERY! I lost my brand new home, my car, my great job, my step son, my mariage. I moved away. Started drinkin again. Lost my sanity. Tried to OD. I moved away from everyone & everything. Tried to start my life over. Which isnt that what life is all about?? Starting over??

My MS symptoms are just bad enough to be annoying to me. I can still hide it from the world. I chose not to. I wear my MS on my sleeve like a medal of honor. I want everyone to know what Ive been through & still go through. To understand all this, you understand me. I dont take any med's as of now. I refuse to. I know someday I might have to consider it. My postive is that they gav me a handi cap parking permit for the rest of my life. So, when its cold out & the rest of u ******* have to park in BFE at Wal-Mart, I can pull right up front & laugh at all of ur dirty glares. Which brings me to this.... Why do ppl judge what they dont know? I may not look "sick" but I get tired real fast, especially from walking. Which is why I have that pass. Just bc a person doesnt look handi-capped doesnt mean they dont have a dissability. If you dont know why they park there then  ask. Id mch rather have u ask me why then stare at me & wisper bout it to ur friend. :)
Since then, I have filed for SSD & been approved. I havent worked since Aug 2005. I miss it alot! I recently got married to an amazing man & have a wonderful 6 yr old step son. This past Nov I had 3 seziours after a wisdom tooth being pulled. All tests were normal & they couldnt find out why. Since then, my symptoms have been worse. Always tired & always in pain. But, I still wake up every morning & smile for all that I have!

[Michele_R]

Thanks so much for the advice. I will be seeing a Pain Managment doctor later today. I hope it isnt a waste of my time & money. Most doctor visits have been in the past. Since nothing shows up on tests, then I must be ok. lol It gets very fustrating. I will update later to let you all know how it goes.

I did recently get a Wii Fit to do yoga & help with balance. It is soooo much fun!  I am a hula hooping pro!! lol My center of balance is way off & it is improving the more I do it. I try to do 15 mins a day 3 times a week. It doesnt make the pain go away but, it does help me not fall over as much. :)

[Khiba]

I also have nerve pain. My hands and feet are numb and hurt. I take Lyrica and don't swell up unless I don't drink enough water or eat too much salty food. It helps a lot!

I found that starting with a low dose and building up gradually was better than jumping right into a full dose.

I take 50 mg Lyrica and valium (2.5mg) before I go to bed and sleep well. It knocks me out and deals with the pain at the same time. Then in the day I take 25 mg Lyrica at 8 AM and again at 3 PM and the pain usually stays gone.

Like Jane said, give the Biofreeze a try or bengay, or Icy Hot. it confuses the pain/brain cycle and does give relief.

Hang in there!

Jessica

[jed9999]

Well, hello!I sort of know Shell already from posts in other areas here. I feel I sort of know Michelle because it looks like she lives within 30 miles of me--if not closer! I'm on the east side of  Evansville, Michelle! I just turned 60 and I have had the MS diagnosis since I was 24. Pain has been my biggest problme-even back when they didn't acknowledge pain was a part of MS--and that's what they said. At least hopefully you don't have that hurdle. I have tried many remedies for pains as I've had them many places in my body too over the years. Right now I'm advocating Biofreeze which comes in salve, rollon and spray--it isn't sold in stores but can be found any number of places on the Internet. It's been helpful to me! I found you just because I looked in the profiles in the middle of the night--also have trouble sleeping. Please tell me your story now. Cheers, Jane

[sllowe]

Yea, I heard that it gives you a heck of an appetite. Something I've got no problem w/so I didn't fill it.  

We've often talked about going into the Dr. office all scrappy, so they can see the "real" us.  When we get duddied up for an outing, it's disceiving for sure.  We shouldn't be judged on appearance, but it happens a lot.

Glad to hear you will talk to your Dr. about the pain management.  We have few here who have gone - just not so sure who is around, but hope they see this and pop in if they are able.

[Michele_R]

Thank you for your response. I have not tried the Lyrica. I do know people who have tried it & they have swelled up from taking it. So a little scared to try it lol.

I have not been to a pain doctor but, I think that is my next step. I just feel that when I go into my doctors, they see me walk in & Im not crying curled up on the floor, so I must be ok! lol

I will check out more of the site & see what I can find.

Thanks again,
Me :)

[sllowe]

Hi Michele,

Thanks for coming along.  I respect your decision to not take the meds.  But, I hate that you've gotten no relief for your pain as of yet.

Is your Dr. willing to send you to a pain management Dr? ONe that can work on a combo of meds that may help you out?

You didn't mention the Lyrica - some have had good results with that.  I have no personal experience with it, but was prescibed it for parathesias in my back which is constant.

This not sleeping is torture.  I struggle with it too, and have had success w/Restoril, but after 5 months, I became allergic to it.

I hope you stick around. I know you will get a lot of our experiences of varying meds.  We have a wonderful write up in our health pages from a pain Dr. Hope you are able to check it out.

Again, welcome, and see you around,
Shell