DU You don’t have to talk to yourself! We are here to listen. I think most of us have overdone it a few times and curse ourselves for awhile afterward. Its not easy to always be thinking of whether or not you overdo, it just happens when you are having fun. Unfortunately the aftermath isn’t! I hope you feel better soon. By the way did you find any fun things at the sales?

Hi Donna,
You mentioned acetaminophin, Kevie also takes aleve, it seems to help w/ his burning pain more. We take 2 reg stregnth tylenol and then follow an hour later w/aleve. PS, I talk to myuself all the time, I even ask myself questions, and do not get answers!!! Feel better.
Dawn Kevies mom

Ooooooooooooh I love yard sales and thrift shops. And I am guilty of over doing it too and paying for it the next few days. But I can’t just stop doing some of the stuff I love…so I stopped doing most of the stuff I hate, cooking, cleaning, laundry:D To all you fellow “junkers” keep alooking for that special something. And To everyone, best wishes!

Have you seen an doctor who can prescribe you with pain meds? There are a lot out there. It seems you want a lot of support, but when given, you get insulted.
This board is made up of some great people and are huge on support! I hope you find the answers you want to hear!

Hi Donna! You just met a yardsale junkie! Will have to post a few photo’s of my yard sale finds for my house is amost all yard sale stuff! I have alot of antique furniture that I found at yard sales.

Have you tried any inflammatory drugs? The drug you are taking is a pain killer but not a inflammatory drug! It helps for pain but does not take inflammation away. I have to take 600mgs Ibuprophen 3 times a day every single day to keep inflammation down.They started me out on this drug many years ago when I was not diagnosed yet but they knew I had something autoimmune and was in alot of pain.

Something that might help also is B-12 Vitamin. It’s very good for the nervous system. They have two kinds though. One goes into your bloodstream and one is absorbed through the stomach. Many folks that get nerve damage can get malabsortion problems due to the nervous system messing up. I take the One A Day Womens Multi Vitamin every single day but I started out taking two of them to replenish my body. I took two for 1 week and then now down to one a day. The B-12 you can buy Lingual or Sub Lingual.

The Sub Lingual is the best to take letting it melt under the tongue. It gets absorbed into the bloodstream instead of the stomach and works faster building your nervous system up. Your body can’t overdose on B-12 and actually they started me out on two a day the first month and then 1 a day afterwards. There is also some nerve pain cream that is over the counter and helps burning nerve pain. Different names for it but I have Zostriz-HP. Does help on those bad painful overdid it days!

Not really sure what kind of meds you are taking and if you are only taking the drug you mentioned it’s not really helpful inflammatory wise. Not trying to create a problem here just giving you some possible relief things that might help in easing the pain some just in case you are not taking anything else or seeing a doctor right now.

I have bought some really nice things at yard sales. I do alot of crafting too when I feel good. My arms are shot now though! But I used to do alot of crafts. I used to do alot of Sea Shell Art. Actually have sold alot of my arts on Ebay. But have not done it in a while because my arms are shot right now.

I have gone to auctions too! Those estate auctions are fun going to and bidding on things. I bought an old antique mirror and made a headboard out of it. Maybe tomorrow when I have time I will post some of my yard sale finds and let you see what I did with them!
Hope you feel better soon! That B-12 will help your nervous system alot. Try it out and you will see some difference after the first month taking them. Hugs
Linda H

Hi Donna! Nobody is trying to judge you dear! In fact most of us are trying to be helpful and trying to give you some very helpful advice. We see you asking something in here and we are only trying to help you out. Nobody in here is trying to judge you.
Maybe we just don’t understand what it is you are actually asking. We really don’t know much about you or what you are actually going through. We have no idea what kind of meds you are taking. We have no diagnoses of what you have!
You mentioned pain management and we are not sure what to say because you are the one getting all upset here! Calm down Donna! Lighten up a bit here! Take a deep breath and relax some. Your getting offensive with us all in here and we are just trying to be helpful.
In fact I have seen many of us respond to your posting and each of us have love and caring answers. We are trying to show you that we do care about you and really are trying to give you a chance in here!
And each of us do care about you! Maybe you should introduce yourself. Tell us something about you. When I first posted in here I introduced myself and I asked questions and everybody in here all has different opinions. We all have different personalities and a new person when they come in may feel offended at first but it’s because we are trying to get to know you but have never met you and we want to communicate with you but we just say what we think is best. But we are not judging you. There is no judgement at all!
You made a good step in here! You mentioned yard sales! Hey I love yard sales! I can’t wait to take a picture in here and let you see what I did with my finds. And how fun it is finding things!
What we need to do here is let you introduce yourself. Tell us a little bit about you. We heard you were in pain and we showed you we cared! And because we don’t know what you take, we might just be giving you a few tips to help you feel better. I hate pain! Not fun dealing with pain. Mine started back in 1988! Long time! 😀 Very long time! I have just learned a few things over the years with advice from others and I tried some of that advice and it helped! We want to help you hon! That’s all! We want to show we care but it’s very hard when you don’t know that person. I found a few great friends in here that we email alot to each other. We talk about politics, recipes and photos, and even their pet goats on their farm. We wish each other good mornings.
Donna! Just give it some time in here. You will find some good friends and they will listen and they will try to help you and they will chat with you! We are here for you dear! We are here! It’s a matter of just getting to know you and reading your postings and trying to understand them. Don’t get offended! Each person in here.. I have had a couple run in’s myself and we clashed with each other at first. But that person did not know me and didn’t understand me. I almost quit the forum. But I hung in there and we now communicate with each other and have no problems now!
You know what it is? There are a bunch of regulars in here that have known each other for a very long time. When a new person comes in they can feel rejected at first because the regulars have gotten to know each other and they are used to talking with each other and they never get offended. That’s because they know each other now! They say what they feel and when someone says they are in pain each person will tell what helps them in hopes that it helps you. The posting did sound offending but she and I too we are trying to help you, but each time somebody say’s something you get hurt and upset! In your last posting you went to Trey and had him close out your posting. So we are thinking that you got all angry and offended and then you come back and here we are trying to give you a chance but some may have gotten upset in here because of what you said in that posting. So we are kind of lost here! We are trying to give you a chance Donna! You just need to calm down and lets start over okay! What we are going to do now is start over! Your next posting, I would like to see you introduce yourself! Tells us something about you. Your meds, your symptoms and any questions. Tomorrow come back and repost a new posting and tell us about you.
Don’t get offended okay! If you see an offending post, just ignore it! You don’t have to answer to that posting! And just ignore it! Just want to let you know I have been on forums before and many of them shut down because of fighting on the internet with each other. Forcing a good site to close down loosing our support system. Donna! We all need help here! Many in here undiagnosed and very sick! Give it some time! Every forum you go to is always going to have one that you don’t like posting too. Ones you don’t like you just pass the posting and ignore them. I always give someone a chance. And I have a strike system! Strike 1 I let it go and keep trying. Strike 2 I still try to make the friendship work but I back off from that person. Strike 3… I ignore completely and will not answer that posting. I will do anything to make sure that this does not close. Too many wonderful people in here. Donna got into Ken’s site! I am going to re-introduse myself to you so you can meet me and then you will know a little about me! That way you get to see one of us in here. I am Linda H. But give it a chance! I bet in the next two weeks you will be in here an be a part of the team we have and forget this all happened! Just relax and ignore anything that offends you! If not you will go to another forum and find the same thing and will feel like the world dosen’t care! So stick with us okay! Hang in there! Hey! Giving you a big fat juicy sloppy kissie! 😀 Hugs Hugs

[QUOTE=D.U.]To crlyn 324: Please stop judging me. If you had read my posts, you would know my situation by now. What you’ve said has just made me upset, and my heart is pounding right now from the stress you’ve caused me. Why are you saying insulting things to me? I need the support of this group, not the snide remarks you have just made or some others have made to me. I have posted today to try again to make things work in this group. I do not need to be trashed in insinuating ways. If you can’t say something helpful, then don’t say anything at all.[/QUOTE]

Judging you? I dont understand. I asked you if your doc could prescribe pain meds. Sorry i caused you all that stress. Please tell me exactly what I said that caused you to get so insulted and stressed. Yikes!

[QUOTE=D.U.]I felt that your remarks were a personal attack towards me; I found them provoking.
Read my post below your last one for a full explanation. Enough already. I am not on this site to fend off conflict. I’m exhausted by it.
–Donna[/QUOTE]

Gotcha!
Have a good night

Ladies, Pleaaase!!!! Enough already……..good grief :confused: :rolleyes:

Have a nice day, today……:)

Perry

Perry, I am with you. Enough is enough. Take what you want from the forums and ignore the rest. I know what info I need here. That’s what I read and I ignore the stuff I can’t abide. Everyone on here is entitled to their opinion. It is just that, their opinion.

Hi: No wonder you are having a bad day-finding the right doctor is the most important part of pain management. I have a pain management doc-a Physiatrist, a type of doctor who specializes in pain management. If you can find a physiatrist it might help a lot. I am on 4500mg neurontin and 30 mgs onxycontin and barely stay on top of my pain. It is a day by day thing and I find knowing I will be listened to and consulted in my pain management makes a huge difference. In Colorado I don’t believe we have the same kind of regulation for doctors you mention so it is easier, but I do recommend trying a physiatrist even if you have to drive. I do most of my consults with him on the phone now.
I too am in the chair longer than hoped and know how frustrating that can be. Hope things get better soon, Jeff

All I have to say is: This is a perfect example of universal, socialized, whatever name you want to give it medicine. I am SO SORRY you have to go through this crap to get help. I am so worried about healthcare while on medicaid. How in God’s name is the Gov going to be able to figure out a universal plan for everyone and actually get them what they need. Ivig in particular. I cannot even imagine not being able to get pain meds when needed. If worse came to worse, would the er or an immediate care facility be an option? What about the internet? i have no idea how that works, but I always get adds on my email for vicodin etc. I guess there is always Mexico. How scary to wonder if it is what they say.

Again, I am so sorry you are forced to struggle to get pain relief. Best wishes.
Dawn Kevies mom

Jeff-

I take 200mcg/hr of fentanyl patches which I change every 48hrs. I also take lyrica 300mg per day. My pain is not great. I am often extremely tired alot of the time. This is just an option you might talk to your dr. about.

Best Wishes,
Renee’ Shelly

[FONT=”Comic Sans MS”][SIZE=”3″][COLOR=”Blue”]I ran into a similar problem. My neurologist, didn’t want to increase my pain medication. So he decided to send me to a “Pain Management” doctor two months ago. That when the fun started.

1. None of the “Pain Management” doctors ever heard of CIDP
2. They all said I would have to see a neurologist
3. None of the neurologist will even talk to you without a referral from your GP
4. GP said I already had a neurologist…
5. Now I trying to get approval for a second opinion. When I get it, it is still going to be a problem to find someone with reasonable driving distance that can spell CIDP and even harder to find someone who has treated CIDP

You have to keep your sense of humor about the whole thing or you will go insane. Wait a minute, I think I’ve already passed that point. :p

By the way the above mess is brought to you via the USAF system and Medicare. Just wait till the government takes over the whole system. :eek:[/COLOR][/SIZE][/FONT]

Yes, I understand about the medical professions fear on “pain drugs”. They are scared of losing their licenses”” I now have to be drug tested by pain doc’s staff.
The physiatrist asked- “When will your CIDP would go away”…….
I replied- “Does MS ever go away??”
It took many long years to be diagnosed and that road was simply horrible. The second time I asked my family doctor for pain meds he sent me to a huge pain clinic without ever trying to figure out why I hurt.To be told by doctors/nurses that I would have to learn to live with this pain. How in the world can anyone even say that to a person???
I am on a fentanyl pain patch and inflammation shots.They did nothing till I was put on IVIG. Thank goodness for IVIG-it helps handle the nerve pain enough for me to have some kind of life.
I wish the best in your journey to find help with pain. Please take a friend/advocate with you to any appointments-it helps having that second pair of ears when dealing with the pain clinics””

When you go to the new doctor take some information on GBS and pain with you. Either search the forum threads for pain advice and print that (such as this thread) or even better take some of the information written by a doctor in either the newsletter or in the packet sent out from the GBS-CIDP foundation. The latter is better because doctors appreciated things written by other doctors more than by lay people (even “experts” like us that live with this disease). I say this through working in healthcare.

I would strongly suggest that you ask to be put on neurontin, Cymbalta, or Lyrica. These are all medicines for the pain of peripheral neuropathy–the burning pain in the legs and arms especially feet and hands. This class of medication may work better than lortab, but more importantly for your situation, they do not have the same restrictions as the classic pain medicines/narcotic pain medicines. Neurontin (gabapentin) is an older medicine. Sometimes Cymbalta and Lyrica are denied because they are newer and very expensive. The biggest issues with neurontin is that you often have to start at a lower dose and slowly escalate upward; otherwise you can feel quite sleepy or fussy. The other big problem is that people often do not escalate high enough to really take care of the pain. Often people need high doses–1200 mg three times a day or more.

Another consideration is Ultram, which other people on this forum use for chronic pain. This is regulated, but not as strictly as some of the other (narcotic) pain medicines.

Limekat’s advice to take someone with you is also good–for support and for someone else to say what impact this pain has on your life.

All that being said–if lortab works for you, you should continue to use it as needed as you try new agents or combinations. The priority should be adequate pain control, not just medicines that are easier for caregivers to prescribe. The best treatment for depression is not feeling in awful pain all the time.

WithHope for cure of these diseases.
GBS 3/07

I thought after sending this that maybe it would be helpful to say how to do it. On the home page, look at the News section at the very right, to the right of the forum link. Drop this down to see link to the Communicator Medical Articles Archive. Click this and on the page that presents, type pain into the search square. This will pull up three or four articles from the past. The first is from Summer 1998 by Gareth Parry, MD, entitled Pain in Guillain Barre. It is short and to the point.
I was actually surprised that there was so little written about this aspect that causes so many of us problems….
WithHope for cure of these diseases.

Hi Renee’ Shelly: Thanks for the suggestion-I will ask my pain doctor about fentanyl patches this week as the cost of oxycontin just increased by 50%:eek: Hopefully fentanyl will work for me. Jeff

I do hope it goes well for you. The Lyrica/Cymbalta/Neurontin didn’t work for me-if only they did. I also tried Topomax and some other drugs “off label”.Fentanyl patches can be pricey. Ask your doctor about this-mine helped me find the medicines that worked the best for me and my budget.

My physiatrist said if pain meds worked then that’s what he’d give me. Pain is pain. We did get into it some before my diagnosis-I was on mega pain drugs. I had run from the other huge pain clinic with the “leave your message, your birthday, doctor’s name and…” group and very glad I found this guy. Most pain docs here aren’t listed in the phone book either.

The doctors have no idea of what GBS/CIDP are.I have found support on 2 great pain websites. One sends free newsletters and is full of wonderful information- “Painfoundation.org”.

I do hope it goes well for you. The Lyrica/Cymbalta/Neurontin didn’t work for me-if only they did. I also tried Topomax and some other drugs “off label”.Fentanyl patches can be pricey. Ask your doctor about this-mine helped me find the medicines that worked the best for me and my budget.

My physiatrist said if pain meds worked then that’s what he’d give me. Pain is pain. We did get into it some before my diagnosis-I was on mega pain drugs. I had run from the other huge pain clinic with the “leave your message, your birthday, doctor’s name and…” group and very glad I found this guy. Most pain docs here aren’t listed in the phone book either.

The doctors have no idea of what GBS/CIDP are.I have found support on 2 great pain websites. One sends free newsletters and is full of wonderful information- “Painfoundation.org”.

I know im coming into this discussion late, and maybe no one will see it, but i’ll pass this along anyway.

First, what works for my pain is Ultram, but i haven’t been able to take it since ive been pregnant, so i do take up to 4 vicodin a day. But, it definitely doesn’t work as well as ultram, which is an anti-inflammatory, rather than an opiate, etc. It doesn’t give you the high feeling that so-called “drug seekers” are looking for. I like it because it controlled my pain wonderfully, and i felt no obvious side effects. And, no one seems to raise their eyebrows with that “oh, she takes pain meds” kind of look. Another med i’ve seen work well is the fentanyl patch, and even the sucker (very habit-forming or addictive). There are other forms of fentanyl that can only be given in the hospital setting.

Now, some things that i don’t know how to say without the healthcare professional looking too cautious…

From my experience, asking for pain meds is all in the way you say it. For example, rather than saying, “I need pain medicine”, you could try saying, “I have horrible nerve pain. What do you suggest? I feel like i’ve tried everything in my power, but nothing is working and it is now intolerable”. Let them know that you are willing to try meds like neurontin, lyrica, etc, so they know you are not just looking for a high. I know we shouldn’t have to go through this, but prescription pain meds are the new fad for addicts, especially teenagers. This has made the law, the pharmacies, and doctors, everyone crack down on drugs like vicodin, lortab, percocet and oxycontin.

Another thing i’ve learned is that doctors can become very guarded when a patient comes in asking for a specific drug. When someone says, “I’m in pain. I need ___________”, then the doc may be quick to think something suspicious is happening. So, you may be better off saying, “I’m having horrible nerve pain, which is caused by ________. I don’t care what you do, just help me”. I usually ask them to just make the pain tolerable. Then, they will ask you what has worked in the past (protocol). This makes them feel more comfortable, more in control, and less like they may be taken advantage of.

Another thing id like to add is that many pain meds cause addiction, or atleast are habit-forming because our bodies become tolerant of them. They slowly become less affective, so some people may take 2 pills at a time, rather than one, because one doesn’t control their pain anymore. If this happens to any of you, please, please, please tell your doctor. Be honest. Tell them you think you need to change medications, because no good comes out of taking more and more of what already doesn’t work. It can kill you; I’ve watched it happen many times, and it breaks my heart. Once people start taking more than they are supposed to, then they have an even harder time finding help from anyone, and pain medications don’t work as well on their bodies, so they are always in pain. Chronic pain sufferers are at very high risk for this, so i worry about everyone, including myself. Good luck!

Was it your Neuroligist that took you off the Neurontin and changed it to your new medications or another doctor? How much Neurontin were you taking each day? Regardless of the answers to these questions, it sounds like you need to call your Neuroligist ASAP. Take care. John

Claire, mangement of neuropahy pain is difficult. Amitryptilline 10-25mg at night rasies the pain threshold lessening the pain.

Tegretol (Carbamazepine) was used frequently until replaced by neurontin(gabapentin).

This acts for upto 6 hours so may be needed 4 times in 24 hours; often neuropathic pain increases in the latter part of the day reaching a crescendo in the night; so maximum dose is required at this time. Even though the suggested upper dose is 3,600mg in 24 hours, some here take 5,400mg.

Neurontin tends to cause drowsiness so a chemical relative pregabalin has been developed with less side effect.

Morphine shows tachyphlaxis, that is incresing doses are required to produce the same pain relief, it and oxycodeine are both constipating. DocDavid

Hi Claire: I have chronic pain too. I am on 2400mg of Neurontin, plus I take 5/325 mg percocet tablets as needed, and at night I take 2.5-5.0 mg of valium at night. The valium relaxes the leg muscles and of course helps me sleep. Klonopin at night is also sometimes used. I am almost never pain free totally, but this combination gives me great relief and I sleep well. In addition, of course, I need to rest a lot and will not hesitate to get into bed when the pain is bad. Rest is just as important as the meds, as the fatigue increases the pain and pain increases the fatigue. I also found, as others mentioned, increasing the neurontin helps quite a lot. Good luck. Jeff