On going pain issues
 

Some of you already know I have been having pain issues since mid-august 2007.

I am not happy with the current neuro who I only started seeing last year. He is willing to prescribe narcotics, I am fighting to not use narcotics - it's a personal issue for me.

For those not aware of the meds I have tried: Baclofen, Lyrica, Cymbalta and Klonopin. I have used Klonopin on an as needed basis since 2004 for panic attacks but right now it's the only med I can handle with few side affects and with the ability to minimize the pain for a few hours with each dose.

I had a follow up with my PCP and mentioned I am still dealing with the pain. I use 1mg Klonopin once a day. My PCP looked at the last update he recieved from my neuro - it said nothing about the pain nor the posibility of narcotics or the Klonopin.

My PCP didn't appear to happy. I was very up front with my PCP. I told him I have tried 1mg twice a day (2mg total) and at this point I will run out of Klonopin before the insurance company will approve my refill - I am using more than the prescribed dosage.

My PCP believes pain can be a quality of like issue and should be treated. He wrote out a new script for 1mg twice a day - bless his heart.

I have made an appoinment with my original neuro - the one who dx'd me in 1986 and yes, he is still practicing. I want his opinion on what has been going on and if he has any other suggestions that would be different than I have done or recieved at this point.

My current neuro told me I would just have to live with the pain and deal with my life as such. I'm not ready to accept that answer or option right now.

Hey LeeAnn~ If I didn't take Clonazepam (Klonopin) at bedtime, I would never sleep. The pain would just wake me up all night long. My Neuro and Rheumy both tell me to stay on it. Like you, I don't want to take anything stronger, as the Dr's have told me I can if I want to.

I tried Lyrica and it gave me some wild side effects, so stopped it.

With my reg pain plus the back probs I have, it's just impossible to function w/o the Klonopin and believe me, I tried.

Glad your PCP wrote the script. No sense being in constant pain if it can be helped. Hope the new dose does the trick.

take care; your'e waaaay too special to hurt all the time..:hug:

The strange thing - I have no pain when sleeping even without meds. The pain is there only when I'm awake.

So sorry for your pain, Snoopy. I'm glad to hear your PCP has a heart and decided to help you with your pain issues.. I dropped my Neuro and only see my PCP now.

I hope you and your Doc can find something just for you. Have you tried that non-narcotic pain patch, I've been hearing about?

:hug:

No, I haven't tried it and not familiar with it. I guess this is just one more reason to see my old neuro :rolleyes:

Did you read any of Braingonebad's posts about the pain clinic and the drugs they have her on? She is, finally, having some relief. One is a patch and the other is a pill. Flector is one name and Robaxim is the other.

Here is one of the threads:

http://neurotalk.psychcentral.com/thread41989.html

IMHO, you need a pain clinic. As you can see from Cathy's experience, there can be other solutions that are non-narcotic. I saw a post of her's the other day that said she could actually work i her garden without the horrible pain.

Your PCP is right that pain is a quality of life issue. You deserve to have it aggressively treated.

Sorry to hear your pain is still an issue! I'm not painfree by any means but Elavil at night helps me. It is one of the old style antidepressants.

Night is my worst time for pain...I'd say from about 7 until I finally break down and take my night time cocktail of pills...Neurontin, Requip and Elavil. It takes the edge off and helps me sleep. I have Vicodin but it does nothing for my nerve pain. Nada!

Take care friend and I hope you and your PCP get it figured out for you.

Holly, thanks for the link to Cathys thread, I missed it :o

Brenda, sorry your dealing with so much pain :(

This is considered sensory - it's the same stuff that started after the UTI - pain and pressure in the pelvic area, pain of the urethra and external burning.

My current neuro has called me med sensitive. After all these years this is the first time I have needed a med long term and I can't seem to find one that works well or where the side affects don't bother me.

Holly just mentioned the name of it...Flector!! :)

Aww Snoop
I'm sorry you've got so much pain and so little relief. I too have mostly sensory stuff and am med sensitive too. Klonopin is great for anxiety, I've tried some, but don't have a script now.

I've found a bit of relief from the most annoying tinglies in my extremities and upper left ear, from my anti-siezure med (trileptal). I get no relief for the burning/freezing and pressure stuff though.

I found that out last week when I had run out when filling the pill box for the week. When I got the refill, I'd forgotten that I needed to finish filling the pill box. After two days I thought I was relapsing.

When I went to fill my pill box on the last day for the next week, I realized what was missing and quickly popped 2 tabs, then and 2 at bedtime. The next morning tinglies had become more tolerable and I now don't mind taking the med because I do get a bit of relief.

It doesn't take them away entirely, I need to call and see how high I can go. Wellbutrin was the only one that gave my hands any real help. I had a horrible siezure and dislocated my shoulder during it in 2002. Now that I've had a 2nd siezure it is for sure off my list. :(

A pain doc sounds like an excellent plan. I saw one in Denver last year and he is the one that suggested Namenda (alzheimer med) because he's has some success with his MS patients. If you PM me, I can get you his name and number. I'll be starting Namenda on Sunday, my neuro agreed this week.

Good luck with your old neuro. It will be good to find out what he has to say. Be sure and let us know.

:hug:

Sorry Snoopy for your pain. I wish there was something that would help you that YOU would be Ok with. I respect your decision to not go narcotic. All I wish is that you find some relief and fast. Hugs.

Have you tried ultram? It is non-narcotic (although have started some that are highly addictive personalities on their path to addiction - I am an addiction nurse and only saw it one time). I take one half in the am to help with my RLS and the thigh pain that I have had since my last relapse.

It works REALLY WELL!!!! My friend with ms (who is in a wc) was on vicodin/lortab, and switched to ultram, likes it better, and says it works better.

It also works in an anti anxiety/depressant way which is an added benefit to us.

My neuro started me on neurontin for my rls, 300 x 3 a day. I am only taking one at night, and it is working well so far, so I plan on sticking with one. I also take 0.5 klonipin at night for my rls.

Ask about the ultram. It is really good stuff, not controlled, and non-narcotic. I have a high tolerance to pain meds. Darvocet doesn't touch me, vicoden barely does it, percocets do me in.

Also, it doesn't make me sleepy. Matter of fact, I can't sleep when I take it. I can relax really well, but just can't get to sleep, so I generally don't take it after 4 pm.

Good luck

Thank you, Beth. I will keep your offer in mind about the PM for the name of the pain doctor. I'm just not quite ready for that - I hope you understand.

beautytransforming, no, I haven't tried Ultram actually there's probably a fair amount of meds I haven't tried. One of the reasons I'm going back to my old neuro in May. I just don't think the current neuro and I are a good match.

Addiction is my main reason for trying to stay away from the narcotics although I am aware Klonopin can be addictive :rolleyes:

I have a family history of addiction and I refuse to go down that road.

I would like to apologize to everyone who has read pervious threads of mine on this same topic. I'm sure some of you may be getting tired of hearing about it ;)

I am just very frustrated at this time and so, I guess you could say I am having a mini vent :p

Thanks, everyone for understanding :hug:

Snoopy, so sorry for ALL you are going through.

Did you say your pain is in the pelvic region? Bladder?
Cuz I have had a sudden severe pain in my bladder like a UTI starting and no infection!! It lasted 2-3 days at the most. Twice last year, I just wondered...

But, have you had this thoroughly checked out? how do they know its only sensory? I mean it could be but how did they come to that conclusion?

I would want to know the origin of the pain. I see two practitioners that can often get to the source of pain. ONe is my guru of a chiropractor, who can READ the body's reflexes to know where the nerve bundles may be off. He then can touch with a finger and release the nerve bundles and whalla.. the electrical source from the brain can now reach the injured area and HEAL it even if internal.

The other guru I see, is my nutritionist who has this amazing tool to evaluate sources in the brain and all body systems that may be the source of the problem. AND he has compounds, whole foods that nuture the injured, toxic or deficient area and again its often the source of pain, or inflammation.

Just some ideas.If you want to knowmore PM me ok?

Hope you get the right med combo that works for you. Yes the anti-seizure meds work too and are not narcotic.

Best to you, keep us posted !!

Warmly, Jan

Jan, I went to my PCP when this all started. I had a UTI back in Mid-August 2007 which was treated but I still felt like it was there. My PCP also ran quite a bit of bloodwork which all came back fine.

My PCP referred me to an Urologist who used an Endocope in through the urethra to the bladder and then inflated the bladder with water - everything was fine, nothing abnormal.

Next referral was to a GYN - everything was where it was supposed to be and testing came back normal.

I already had a follow up with my neuro so I decided to ask if there was anyway possible this was the MS. The answer was yes. He said he has other patients who have had the same complaint as mine and since I had other tests to rule other possibilities out then it comes down to the MS.

My neuro told me for the external pain he was not aware of anything topical to use that would help.

I'm like the kid who is told not to touch the stove because it's hot but the kid touches it anyway just to see if it's true:rolleyes:. I decided to try different things externally to see if I could stop or at least minimize the pain in that area - it actually made the pain worse.

Oops! Forgot to mention I also had a Pelvic ultrasound which came out normal.

I understand the addiction thing. I come from a family racked with addiction. Mine was food. I got up to 303#, which is why I had gastric bypass.

I take the klonipin. I have taken myself off of it a few times to ensure I am not addicted. You are taking a low dose, so I don't think you have much to worry about.

I also would not worry about the ultram. As I said, I take 1/2 and it lasts all day for me (but I only have mild pain). I think this may be a good option (coming from the nurse in me and the addiction specialist in me) for you. It isn't hard on your stomach like NSAIDS, no control issues like narcs, and good pain relief.

Good luck. I hope you find something to help :)

Connie

Oh good Grief! (think Charlie Brown :p) I used Ultram a couple of years ago to help with the pain from a rotator cuff tear but didn't connect it until I googled Ultram and also found the other name for it - Tramadol :Doh:

I have been using Klonopin off and on since 2004 for panic attacks and my Psychiatrist complained I underused it :rolleyes: I know I'm not addicted to Klonopin because if there happens to be a day or two or three I don't take a Klonopin without a problem. I would rather save the Klonopin for the times I may need it for panic attacks.

Thanks, Connie

I'm so sorry Snoopy that the pain continues. I'm sick of telling Doc's about it....they don't get it. I know its there, but they can't do anything more than give me drugs and more drugs. I pick and choose which one I want/need at each time of the day. I give up :(

Ah LeeAnn...I am sorry to hear that you are still having pain problems. :(:hug:

I know we've talked about this before and I completely understand the addiction issues...I use klonopin only at night, 1 mg, as it puts me to sleep! There's no way I could take it during the day! LOL! I am med sensitive...lol! Anyway...we all know that about me!

I am glad that you got a 'script from your PCP and you have an appt with the old neuro...here's hoping he has some insight.

I don't have any med advice other than the klonopin. I take that and norco when i need it, which is a stronger vicodin, for neuropathic pain.


:hug:

Snoopy
I completely understand, no pressure intended. I was just opening an avenue if you chose it fine, if not no sweat.

I get the addiction and the frustration, alot feel that way too. No apologies necessary, either.

Post everyday if it helps. I know I feel better when I get stuff out of my head. We are all here to help and receive help too. If anyone gets it, it's us.

So don't be a stranger here. We want to hear the good and the bad, no judgements. That's what makes this place so special.

:hug:

Hi Snoopy,
This is probably a lame suggestion but here it is...

I take 800 ibuprofen - for me it has to be the prescribed one - taking 4 advil is not the same for me and bothers my stomach. I have tried tons of muscle relaxers, lyrica, neurontin, anaprox, and others. But nothing works like that 800 ibuprofen.

I have leg pain and weakness.

I've been offered all kinds of pain meds and I just keep turning them down - I'm with you - I don't want anything addictive.

I have a friend who works for a compounding pharmacist - and he was telling me that they can make all different kinds of pain patches, sublingual pain meds, and oral meds which combine more than one medicine to make their action stronger at a lesser dosage.

Don't give up trying to find a solution. My pain really wears me out and changes me. It's tough.

There is no suggestion I would consider lame at this point ;)

Thanks!

LDN

:D Cherie

:Bow:

Yes, I know and one of many things I will bring up to my neuro in May :D

Hey LeeAnn,

I don't know if this will help or not but your pain symptoms sound very familiar. A few years ago I had the same type of pain for what seemed like forever. Mine started after a few UTIs too. It's really hard to explain how bad it feels. :(

Anyway, the urologist I went to at the time said I had neurogenic bladder , which I think was his way of saying......I don't know! He did give me a prescription & I think the name of it was Urelle. All I remember for sure was I peed blue for a long time. It was the only thing that ever helped at all. You might want to ask you doctor about it.

I don't know if you've been tested for it or not, but has anybody considered it might be a kidney stone. That's what mine turned out to be. My Neuro, PCP & Urologist all thought it was because of MS & ooops, turned out to be something else. Being a weird person, with a weird disease nobody even considered I might be having weird kidney stone symptoms.

Just a thought.....don't know if it applies to you at all, but ya never know. And, dang it, I sure hope you get some relief soon. Constant pain is just drains you. :Sigh:

Hi Snoopy!

What about a pain clinic? I know an mser who has other problems and that is where she ended up.

Have you tried neurontin? I don't know what type of pain, but, maybe it's worth a try.

Hope3 you have a better day,

Carrie

Hi, Michelle.

I do know from the blood work my kidney function is good. I don't have any pain in the area of the kidneys, my PCP has checked a few times.

I was supposed to go back for a follow up pelvic ultrasound and the gyn wanted them to check and see if I have both my kidneys - I never followed through, at that point I had had enough of doctors and testing - just stick a fork in me I was done. Probably not the best decision I could have made :rolleyes:

Peeing blue - now that could be entertaining :D

Brain, I am sooo glad you found something for your pain. I will certainly ask my neuro when I see him - Thanks :)

Carrie, I'm just not ready to head for a pain clinic.....yet :rolleyes:
No, I have not tried Neurontin. My current neuro felt Lyrica was better. One of many reasons I'm headed back to see my original neuro.

LeeAnn,

I'm sorry that pain is such an issue for you and that your doctor is less than supportive. :(

I have pain issues too and I take several meds. Cymbalta 60mg in the AM; Zoloft and Trazodone at night (I suppose they help somewhat?). I also take Baclofen but I'm weaning myself off very slowly. I'm down to 10mg 2x daily.

I don't have any other suggestions but I hope you get some relief soon. :hug:

Brain, I haven't ruled anything out at this point including a pain clinic and thank you for the extra information about them :)

I really am just waiting to see my original neuro May 6th and get his opinion and insight - I really adore him and in my opinion he is very good at what he does, Although he is not a MS specialist his professor wrote a book on MS many years ago and was the first book I had ever read on MS.

Hi Snoopy
I was just thinking about you and your pain. Back earlier in my MS career, I was using Wellbutrin to help with the sensory pain, mostly in my hands. It was the only med to bring me any sense of relief.

I had to stop after I developed a siezure disorder, relating to my MS, not the med.

Just a thought. Throwing it out in the universe.

:hug: