Crying and Lost!
 

I'm trying to stay hopeful as I want to practice what I preach to you and others but I feel so lost and depressed. I went to the reg doc yesterday and again because she played with my inner ankle/foot I had a backslide in pain and have been crying since and taking vicadin. Any progress I see is ruined by a doc or a test. I tell them this every time and they still stretch the area. I'm loosing my mind. I will respond on this post to the other I wrote. The pm clinic here doesn't deal with meds and I have already had the shots which made me worse. At this point when ever a doc does a treatment I end up worse and this is every time along with pt or any tests. I can't go through that anymore. Its not just that day but even a week later. So onto the med issue. I talked to the neuro about the neurontin and feeling sick so she said maybe try the elavil again at higher. I heard though neurontin is better for this pain so may try to stay and see if I can adjust. Also prescribed lidocaine patch. Has anyone had any relief with this? I'm going to be in the poor house those cost 200 a month and my insurance doesn't cover. OY! I wanted her to come up with a med that has very little side effect but I have tried cymbalta,lyrica,neurontin,elavil. Does anyone know of any and that work that I could ask about? I'm waiting for the places like Mayo and Chicago but at this point I don't know how willing I am to go to more docs as they never listen when I say don't do anything to that area and I pay for days.Even through the vicadin again and I'm suppose to be off of that and I was until this. She prescribed naperson and motrin something too cause tramadol does nothing. Sorry for my vent but I feel the docs are confused with me and what to do. I'm a hard case like many of you I know but with my crappy past and still young age, I feel they see very few with my issues.Thanks.

Questions
 

Daniella,

Have you ever stated what your diagnosis is and if not, then have you filled out Liza Jane's charts located at www.lizajane.org? I've tried to go back and look at posts about what is going on with you, but what I'm finding is lost relationships, pain, using a cane and this type of post. Did you ever give us any info as to what your diagnosis is, how it was arrived at and what the treatment plan is?

I feel quite frustrated because I'm not able to find it and I want to be able to help. I'm sorry you are in pain again.

Billye

I have a list of about 75 meds for PN, that I've been keeping
and add to - anytime I see a new one.
If you want.....I'll PM it to you

Thanks. Yes actually many tests and different docs I have been dx with pn that was from the last ssep/nc. They are thinking there may be another dx for my other come and go symptoms but the bed rest pain is my left inner ankle/foot/calf. Really I feel like I'm back to suqare 1 from that doc. We thought it had started from an overuse injury but then with my other issues like feeling like a shot in the neck sometime,other leg issue,but the major and unfunctionable is the left.So finally the neuro dx with pn. I do have a long past of anorexia and that could of contributed to that but the eating disorder is still well now. I can't stand it the pain and not being able to function. The plan now is pain managment with meds but I'm so sensitive. So that is why I'm wondering if anyone knows of a med that seems to work with very little side effects?The patch I just got is as needed but was wondering if it just works when on or does it also help and build in the system?

Daniella, I couldn't handle any of the other drugs that zombied me out until they give me 200 mg Tramadol Slow Release x 2 per day, actually it was 300 mg x2 tramadol but the normal limit in OZ & the US is 200mg x 2 per day, apparently i was lucky to get the extra 100 mg, but anyway it worked with no side affects to me.
Also 150 mg Endep at night and 25 mg in the morning done the trick for me.
I must add that this worked good for me, it may or may not work as good for someone else, its only a suggestion that helped me.
I really do hope you find something that helps considerably for you.
good luck
Brian :)

What do you mean the patch is as needed? Are you talking about the fentanyl pain patch?. Have they changed the way they prescribed it??

You can use this only when you need it???. I never knew this. Alan wore it for 3 days and then changed the patch. When the pain got really bad (breakthrough pain), he needed vicodin.

Then the doctor prescribed it every two days. You should have seen the fight we had with the pharmacist who argued with us saying "no one would ever prescribe this for every two days". "It's a 3 day patch". Alan simply said "call up the doctor" (he was a pain management specialist out of Coney Island Hospital). Guess who got it for two days???

brother!!!

I do hope you get some relief.

Melody

Thanks. I actually just called my reg doc who put me back in this pain. I wasn't going to but my encouraged me to. I'm not good with confrontation but I finally got off the vicadin before the apt and asked her not to play with my leg and she did. I don't know what it will achieve but will see. Anyhow I was on tramadol and it did nothing. I was wondering if anyone has been on topomax? I saw something about how it helps with pain when I was researching the head pressure/stuffy feeling I get sometimes and someone said they were on it for nerve pain. I have never heard of endep. I will check that out. Do you guys ask your docs about the meds you hear? I just go on what they say but now I feel like there really not working hard enough for the pain I'm in. I'm glad you found something to help you.

Elavil is the same as Endep [Amitriptyline], my dosage was changed a few times before i got the right amount that worked for me.

Yes, I was on Topamax for a short time and found that it did help with pain. I have been on so many different things, it is hard to keep these straight. I am fairly sure I recall that Topamax made me feel somewhat confused, and somewhat out of it, but it did dull the pain.

It is perfectly alright for you to ask your doctor about various medications that you hear about. Don't be afraid to ask, you may come across a winner that will help.

Also, I don't know what the rest of you think about this, but if I told a doctor not to touch my leg, I would be pi**ed if they went ahead and did it anyway. This happens every time she goes to the doctor and she comes home worse than when she went.

Wonder if an epidural or trigger point injections would help? I am not sure you could even tolerate the injections in that area, but if some of the pain is from inflammation, perhaps this would help overall. Has she mentioned either of these to you? Trigger point injections are tiny injections given in the area of pain and I know those areas hurt, but they have lidocaine and a little cortisone in them, which helps if there is inflammation.

She has repeatedly complained of having problems with flulike symptoms. I wonder if seeing a Rheumatologist, even if rheumatological testing is normal, might be a good idea. I don't remember you mentioning this in emails Daniella.

Cathie

The patch
 

Hi Daniella;

You mentioned the lidocaine patch. This is much different than pain patches, a method of delivering pain meds. I use the lidocaine patches and they do help, although nothing I take completely ever takes the pain away. You may want to talk to your doc about the pain patches. Also, if the vicodin isn't working, have you tried percocet, (which is oxycodone with acetaminophen)? I take that for breakthrough because my pain doc says it's best for nerve pain. They all have different opinions and that can drive a person nuts when they see 5+ doctors for their condition.

Unfortunately, it takes a very long time to find an answer for pain control. You may have to find a new doc. Mayo in MN has a program for pain. I think it is a week long and others have had their insurance cover it. Something to look into. I'm so sorry you are in pain and that exams hurt you. I have the same problem but I must look mean because when I tell them not to touch me, they don't! lol

Wish I had more to tell you. Hang in there.

NancyH

I'm on Topamax and it helps me a lot
 

I don't seem to have the mental fog that some people feel with it. We started me on a low dose, and now I'm on the highest dose allowable.

I get a lot of breakthrough pain when it's hot outside. I use anti-inflamatory meds for that...

Today I am home because I am starting to get a lot of "body aches" all over. Like joint pain, not in the bones, but in the muscles around the joints. Can't figure that one out, but the Topamax has helped with the PN pain.

Good Luck!

Daniella, I think maybe you might try being a little more forceful when you tell the doctor not to touch you somewhere because it hurts so much. I know this is not the way you like to be, but you have to speak up for yourself.

I doubt that Nancy looks mean, but there must be something about the way she tells them not to touch her, that tells them she means business...

Cathie

Thank you all for your support and help. Your all wonderful and I'm sorry for all your pain as well. Melody its a lidocaine patch where you can wear it on the area for up to 12 hours and then off so I didn't know if over time it helps the pain overall or only when on. As for Mayo I dent my reports there so waiting to hear. I actually had two cortisone mix of something shot in that area and it made it worse. The doc issue I did call her to let her know what happened and that I knew but have not heard back. I do agree that I should of been more forceful. I fear making them mad or anyone or not doing exactly what they say. That is why I'm so confused and also why I have been sent for random tests and docs. I almost feel some of these doc make a commision on somethings. I don't know. Also I'm 28 but look like 20 or 22 and I feel they talk to me like I'm 12 and feel they can do more what they want. I'm sure it happens to older people too but I wonder if they just think I'm being a baby. Trust me I tell them at one point the pain is like wanting to die and also I don't cmplain usually I have beem in cardiac units and always waited till the last possible. Thank you for your med advice too. I may bring it up or maybe more of a combo of med cause I feel no relief and it make me sick.As for vicadin it is the thing that does take the edge off but I have high liver and have been on this for 3 months on and off which adds to the liver issue. Well thank you again

Daniella some meds can change the
 

#'s for liver function. I also am sensitive to some meds, I ask for a 'sample' pack[s] from the doc along with the 90 day script [for mailing in under my insurance plan] This gives me a few to try out and see if I have any bad reactions to the new med and IF I get a bad reaction, I'm not throwing away a lot of pills.
Docs who are patronising are well, docs I tend to not go to again! At times I have found comparing the PN pain to other types of pains [broken leg, fractured ribs...that kind of thing] helps the doctor assess the degree of your pain. These days I tell them I cannot put a number on my 'pain' as I've had it soo long I can't remember what being pain-free is like....and it's true. I guess you could say I've sort of gotten used to it.
I do use the lidocaine patches and they do help me. I have the ultracet as my back-up pain killer, along with the regular doses of daily anti-seizure meds.
Do take a look at all the meds listed in the 'stickies'. Share the 'list' [not the source] with your neuro, maybe....There mite just be a med on there that he has not considered. Worth a try?
Hang in there - you WILL find the right combination that does help keep that pain in it's place! - j

D
 

If there is a spot on your leg that you do no want the Dr. to touch,
PUT IN BIG PRINT do not touch,or hands off,so on. Dr's do this before
there own Dr. visits or before surgery this leg,this arm. I have seen it for
years and as a nurse helped a annious patients write all over spots
that go in one ear and out the other with careless or hard of hearing drs.
must need new batteries. Honest D it's your body,if you think or if they
ignored and hurt you before ,start writing. They are Drs. not God's,i have
a spot on one of my ancles that hurts, i point at DON"T TOUCH and
say in LOUD VOICE that hurt's remember. It doesn't hurt to do it with a
sweet smile or a big :D Sue Hope you get some help soon.

Thanks I talked to the reg doc today but put in a call to the neuro to talk about meds because this is not working and I should get a call tomorrow. I told the doc today who touched me that I knew this was going to happen and it was not out of fear like she thought but reality cause it happens every time. I take a little step forward off vicadin and then back when they touch me. She said I have to let people touch me. Why? What does it prove? She said my pain is complex and wasnts me to go to the pain clinic there. I said at this point I'm not willing but will think about it and talk to the neuro and she already made the apt. I have done everything for 4 months they have told. This has accomplished making me worse then when I started no joke. Not only is the issue worse but I feel ill from the meds and like run over by a bus. I go in and out of dizzy and feel nausea,out of body,ache now more all over and the leg now is worse. All the things they say won't make it worse like the pt,tests, so on do.I want to be better and would do anything. I'm not afraid of needles or surgery but to be put in more pain with this issue I can't handle anymore. I have hit my physical and mental limit. I want to try a new med and will talk to the neuro again tomorrow as now wants back on elvil which did nothing. Up till today was taking neurontin but I think I would rather if have to go back to current try cymbalta again at the lower as I was and fine side effect way but not relief but then the higher made me sick. See no clue. I agree these docs have been comparing mine to an injury. She even gave me a stretching info for heel spurs or the neuro said something like shin splints. Yeah that is bed rest pain for 4 months in tears.Also the pain system they want a rating or checking to see if it hurts proves what? Do they want to make us in more pain and they do nothing even when you say a high pain. Well I'll update more tomorrow if or when the neuro calls me back if she doesn't that will make me po and I think will go back to the original that I disliked at least he calls. Thank you for your support.

Daniella
 

Please, please see a pain clinic. And I'm wondering: Has anyone looked at you to see if you have RSD? Let me see if I can find a link......http://www.ninds.nih.gov/disorders/r..._dystrophy.htm You keep talking about your leg, was there an injury to your leg or your foot?

Billye

Thanks. Well at first I thought it was an injury from exercise overuse but it turned out to be nerve damage. They did bring up the rsd but none of the tests indicate that. I have other come and go issues but the left inner ankle/foot/calf is the bed rest pain issue. I really like the licodine patch and it helps I think.Does that only help though when on or does it build up like other meds? I was able to do a couple things today which is such a pleasure and now am taking their pain med tramadol instead of vicadin well today is the first day back and were going back to cymbalta as I talked to the neuro today and off elavil. I'm so drained and right now the neuro said to wait for the pc because of how I can't be touched at all without being sent back and having to take vicadin every few hours so to try this first. I'm having random panic attacks cause I feel I will never be "normal", I can't sleep,the pain. You guys know but thank goodness the horrible pain from the past few days has lessened and able to do a few things. The small pleasures like going to the grocery. Who would of thought. Well thank you again.Also thank you because you encouraged me all to use my voice to the docs and speak up. I asked about the cymbalta and told the one doc how she really hurt me when I specifically asked her not to touch me and I knew that would happen and I told the neuro who refered me to her. Its hard for me to speak up so thanks for the encouragment.

Daniella:

Oh, Lidocaine Patches. I have them in my closet. They save my life when my frozen shoulder acts up.

And they last a long time.

I had a double heel spur in my left foot, years ago. I got the orthotics. I really couldn't walk without them. The pain in my heel drove me crazy.I got a shot in my heel. And they did ultrasound also. So what happened??? I have no idea. The pain just stopped. Don't know why, don't care why!! And I haven't used the orthotics in a long time. They are still in my sneakers but because it's hot outside, I wear my sandles. I'm very careful with my feet but I like to show my toes. Women are so vain!!!!

Take care Hon.

Melody

Hi Daniella:

Try not to focus on thinking you will never be normal again and take one day at a time. If today was better, maybe tomorrow will be even better. If you can bring yourself to do this, try to find something you can focus on to help get your mind off of this. I know this is terribly hard, but just give it a try. Read, watch TV and if you can, get out of the house a bit each day. Anything that will help give you a mental break from this.

I was also wondering if the fact that your medications are being changed around quite a bit, might aggravate your pain.

And NO, you do not have to let anyone touch you.

Hang in there and let us know if we can help you.

Cathie

Thanks again. The patch does help but still the pain is severe. I'll take any relief of course. I'm thinking I may have to keep an open mind of going to Mayo if they want to see me after they review my reports. Will see I'm trying to take one day at a time but like many of you know it is easier said then done. The distraction is hard when the pain is severe but when less I do see a more positive self of course. I do think the meds are screwing up my stomach that is for sure and the constipation issue. Will see I just want to find the meds for some relief to the leg and that work quicker. I hate the starting over and over again and fear of side effects and not working. Well thanks again. One moment at a time.

Daniella:

Do you know for sure if Mayo is the best place to go for nerve problems? I know they are great in other areas, but I thought Johns Hopkins or Cornell were better known for working with nerve problems.

Maybe someone who is familiar with these will come along and post beneath this and provide more information...

Chin up!
Cathie

That I don't know but we sent it there and to Chicago. I think my mom heard that Mayo has a good program and someone mentioned here they possibly have a week pm. That is scary for me though since I fear being touched. Thanks again.
On another note I was wondering I always see a lot about supplments here but very little on diet. I read through the stickies and saw about omegas etc. I work with a nutritionist for my other issue but was wondering if anyone has found anything else helpful in terms of nutrition. Also if people who are not gluten intolerant found going on a similar diet helpful? I have such severe stomach problems seperate from this and have been tested but nothing comes up. Ok now thanks

Well, a lot of us with neuropathic problems--
 

--who are not necessarily gluten intolerant and/or diabetic or have impaired glucose tolerance, have noticed that going on a gluten free (or, in some cases, a reduced gluten) diet and cutting down on the sugars has helped to ease some of the symptoms.

It's probable that most of us should not eat so many simple carbs anyway, for lots of other health reasons, but it's likely that many of us with nerve damage are particularly sensitive to their determinental effects. And, obvously, diabetes and gluten intolerance are causes of peripheral neuropathy.

It may well be that the gut dysfunction that such sensitivity engenders also hurts us in absorbing other essential vitamins/minerals. Moreover, those of us trying to heal damaged nerves, or any other damaged tissue, indoubtedly need nutrients wellin excess of minimun daily requirements--at the very least, vitamins C, D, and the B's, along with essentail fatty acids and magnesium/calcium/potassium.

In the end, as Wings has noted, we need to create an internal environment that is most conducive to bodily regeneration, flooding it with that which is good for us and trying to avoid that which is not.

Diagnosis?
 

Daniella I have searched the forum for your posts, hoping to find an explanation for what you have, or a history of what has happened, adn couldn't find it.

Please point me to it, if it is here. If not, please tell us--when and how did symptoms begin and develop, and what tests ahve you had and what do they show? If you don't the answers--the exact answers and not just the conclusions---please ask your doctors for copies of all tests.

On www.lizajane.org you will see spreadsheets with lists of tests for neruopathy. If you've had them, fill it in.

But Daniella, the most common thing to cause excruciating foot and lower leg pain as you describe is plantar fasciitis. That makes the foot exquisitely tender. Has anyone considered this? Or are they positive this is peripheral neuropathy? If so, on what basis? What tests show that?

Please share the details or we can't really help as we are able. It's frustrating to not know what to offer you.

I'd like to second what Liza Jane posted, and add something which I think will be the start of you dealing with your pain if you take it to heart.

You need to get your emotions under control in order to effectively deal with this and get relief. Just screaming HELP, HELP, HELP, HELP will not get you effective help. I think you need more than a hug right now. You need hard information, and you need the calmness and patience to put it into use.

Strong negative emotion makes any pain worse, and especially nerve pain. Strong emotion means fear, anger, frustration, worry, hate, panic.

If you calm down and get rid of the panic and just accept emotionally that you have a lot of pain right now and you'll have to endure it for a while, and that you WILL survive, pain or not, I think you'll find that the pain becomes less.

So take a deep breath, and deal with this powerfully. You have not done so in this forum so far. That's why I haven't replied till now. I don't think you've been ready to hear anything that doesn't offer INSTANT relief.

Check out http://www.theacpa.org/people/ten_steps.asp , and the rest of the American Chronic Pain Association site. For your sake, consider what you have to do, and then come back here when you're ready to take charge of yourself, give us the information we need to help, and to listen.

D
 

I wish i was still in Mi. i'm sure we could stagger into the Drs. together,
and totally confuse them. If this keeps up i think your going to have
to go to ER in Ann Arbor do you have a way to get there. I'm going to
E-mail my Nephew in Maryland to see if his brother still in practice in
Ann Arbor. If not maybe he could reccomend someone to help. Hang
in there honey i'll see what i can do. Oh boy it's so hard Sue

Darn it
 

He has retired and out of the country right now. Please if this pain keeps
up you will just have to go through the ER until Eric brother get's back.
Eric left a message for his brother to e-mail me as soon as he can. We
will see what we can he can do. I'm sorry but Sjogren's does effect you
in crazy ways,i forgot all about him. :confused: should be my middle
name. Sue PS i bet alot of us are in nightshirts or gowns,and after
rereading,Bob i bet you got sexy double chins. Cathie,my hairs a differant
color than Billye's same haircut. But Cathie when you said high school
did you have that big old hair,boy i did and i mean big. :D Sue

Sue
 

"Cathie,my hairs a differant
color than Billye's same haircut. But Cathie when you said high school
did you have that big old hair,boy i did and i mean big."

Nope. No big hair... Big came later, compliments of Prednisone, only it wasn't hair... :) :) :)

Cathie

Hi and thank you. I'm somewhat lost on the replies. Thank you Sue for that and emailing that person.I really appreciate it and your so kind. What type of doc is he? I have a referal to u of m but 2-4 mth wait and have gotten so many opinions.I may go to see Mayo too.Right now for the past while no dizzy so I don't know how they will help me at the er as the other didn't. David I'm sorry if I come off like I look for a quick fix but I don't think so. I have seen in the past 4 months 8 different docs and many opinions. I have had every test even if a 1 percent chance. Trying many meds,pt,so on and basically am worse. Any step forward gets ruined by a doc touching me.I agree I get very emotional but my pain through vicadin is hardly relieved. Also when docs are suppose to help you and not only do I not get better I get worse when they say it won't it makes me feel scared and lost.As for my issue its really the left inner ankle but the pain goes through to the foot/calf. My ssep and emg said pn. I think I have 2 dx one unfound. This is because for 3 months just there and why they thought it was tts but no tests showed and had 2 shots without relief. Then I started which have not acted up in awhile the neck feeling like it got shot and the right leg pain. My other tests do show inflamation such as bone scans. At this point though who knows. I may have the pn but also something like heel spurs in addition. I still feel like a huge piece is missing.
Lizzy I have posted before but I will give a little backround to not bore you. I thank you. Anyhow I thought at first it was an overuse injury and started the tests for that. It ruled out that and was put in an airboot in case. It didn't get better after shots to that area and they thought it may be a nerve problem coming from the brain/spine. Started the tests for that while just getting worse and basically bed ridden for 3 months. Now I can finally do errands but the pain basically keeps me in. I'm 28 and have a long history till this year of very severe anorexia. I had been in and out of multiple hospitals with cardiac issues and a very low weight. This may have a part of my current issue. Though better healing from the past programs I have been in is extra slow or also can cause nerve damage. Right now I have what they feel is complex.
Well thank you all and I didn't mean to come off a crying baby. I'm really scared, in horrible pain, and lost. I have never dealt with issues like this and am working on being more calm and less anxious.

I dont think that you have come off as a cry baby at all. We have all felt and at times continue to feel scared, and lost and of course in pain. Its not easy but trying to stay calm and take one day at a time helps us in the long run to deal with this and live our lives the best we can. Having said that, I am not always able to do it,especially when something new pops up or i get the results of a test that show something i dont want to have. I recently got very bad news from a multi slice cat scan of my lungs that sent me in to a tail spin for a while. Im not happy with it now, but what can i do, just keep putting one foot in front of the other and hope to come out the other side someday.

Nope. You are not a crybaby, like many of the rest of us either now, or in the past, just scared and with no direction in your health care.

Has anyone checked out your thyroid?

I know you have had a lot done, but try to get your tests together, if you have copies, and post them as LizaJane was mentioning. There are a lot of people on this forum, who have a lot of knowledge and someone might see something that is important.

Cathie

I was responding to this thread's heading, "Crying and Lost!",and the confusion that followed. I don't think that Daniella picked those words lightly, is lying, or exaggerating.

After the crying and confusion, then what?

Fear is a big part of having a chronic health condition that our doctors haven't been able or possibly willing to diagnose or effectively treat. The link to the American Chronic Pain Association provides 1) ways reduce or eliminate fear, and 2) how to get direction in health care, among other things. There are many other sites, books, and articles that provide the same thing, but just studying the ACPA site shows that there are alternatives to helpless victimhood...the possibility that WE can make it better through our own actions and attitude, including getting the help we need from the right people.

Chronic fear, frustration, or anger are hard on us physically. These strong emotions increase our symptoms dramatically, sap our energy and vitality, cause confusion, and prevent us from doing what we have to do to get a life again outside of our pain, including finding ways to reduce or eliminate the pain.

We can start on the road from being a victim and patient when we cool down our feelings of fear and frustration. We can then become a strong and vibrant person, exercising choices to powerfully and effectively deal with our illness and our lives.

D i have been
 

to Mayo Clinic and this is the truth. My Neurologist said if it was her
she would sell my house and move there to a small apartment,right
by there Clinic. She helped start the one in Chicago,and i'm afraid
i will loose her back to Chicago soon. I told her to make room for me,
she's been so good. I wish you luck and plan on staying a little longer
Than they say. There is ABSOLUTELY no cry babies in this forum or
any others in Neurotalk. Sure we get scare and cry but with the pain
we have we are not babies..We are in pain and it hurts,right now my
hands hurt,why am i using them,to take my mind off the pain.

The other day i came home terrified,i was told i had to go to the Cancer
Hospital here to find out if i have Lymphoma. I got on Neurotalk boy
I was scare,no i was frightened and not thinking. But a group of wonderful
people gave me a chant to say over and over and i do,bess there hearts
i thought things through (they know who they are) We care about you
honey your younger than my youngest. I'm glad you can call your Mom,
and you can always e-mail me. But you have a great group here Sue

Hi. Thank you. I understand about how emotion plays a role in recovery. I have spent many years in and out of residential therapy and outpatient therapy. I have learned many coping mechanisms. I just am not sure how to deal with this issue I guess. In my eating disorder recovery it was about finding healthy coping mechanisms. I guess it was a lot of self talk and following the guidelines set for me. Now with this pain I can barely think sometimes and I'm not seeing any relief. Also the people that I try to listen to the docs have only made me worse. So yes the fear is there but then the fear turns to reality.I can't distract myself easily because the pain doesn't allow me out or even lay in comfort. I feel that if I had more results and anwers I could deal with it but this unknown of what is going on in my body and things getting worse makes it harder.I have had every test like I said and the findings which are more mild doesn't go with the bed ridden pain on vicadin. I'm trying to take one day at a time and focus on what I can do.
Heyjoe and sue I'm so sorry for all your going through too and the others. I'm here for all you too.

Dealing with breakthrough pain
 

Several things are a big help for breakthrough pain.

1. Believe it or not, two Alka Seltzers give the pain relief of a good dose of morphine, without the constipation or dopiness. Alka Seltzer is aspirin, citric acid, and heat-treated baking soda. The soda/citric acid mixture dissolves the aspirin, and the treated baking soda causes the dissolved aspirin to enter the blood stream almost as quickly as if injected. The pain relief occurs within minutes and lasts for hours. As a bonus, this way of getting aspirin doesn't cause stomach irritation or bleeding, is good for your heart, and reduces the risk of several types of cancer. The side effect that stops me from using it more often is tinnitus. I always have a good supply on hand, and use it probably once or twice a week.

Follow instructions on the label. It won't stop nerve pain (not that anything short of massive opiate doses does), but it takes the edge off and allows sleep.

2. Lidocaine skin patches deaden an area effectively for about 4 hours. The lidocaine gets deeper than you'd think. I used it for extremely painful muscle cramping in my shoulder caused by a ruptured cervical disk, and it killed the pain even beneath my shoulder blade.

There are lidocaine salves which work similarly. These are by prescription only and not for daily long term use.

3. Pulsed micro-electric stimulation of the area interferes with pain transmission and reduces pain for a time. After twice daily use for a few weeks, it will reduce pain for 24 hrs after each use. After daily use for months, it will reduce pain for several days. Unlike items #1 and 2 above, pulsed micro-electric stimulation promotes nerve and muscle healing and retrains your nervous system to restore normal reaction to nerve ending stimuli.

The latest and greatest is "interferential electrical stimulation". My physical therapist uses it, and it's very effective. I've also had great relief with the similar, but overpriced "ReBuilder". Use the search function of this forum to find out where to buy and how to these units.

4. Opiates don't kill nerve pain except in very high doses. I used big doses of oxycontin for the disk injury. They stopped the shoulder pain which allowed four hours of sleep (the lidocaine patch gave another 4 hours), but had NO effect on my PN pain. A bigger dose of oxycontin or stronger opiate kills all pain.

Opiates are relatively safe, don't cause dopiness if the dose is appropriate for the pain and have minimal serious side effects. The opiate side effect of extreme constipation make them for occasional use only for me. Still, they're handy to have on hand for emergency use.

5. Cold is worth a try. For neuropathic feet, put your feet in an Epsom salt solution of cool water. Add ice cubes to make the water gradually very cold. Keep your feet in the cold water for about 20 minutes. Then, let the feet warm up naturally, i.e. do not apply artificial heat. If this helps you, it should give relief for several hours, and is good for the health of your nerves in the area. You can do this as often as you like, up to hourly.

Epsom salts are magnesium sulfate. The magnesium absorbed through the skin helps calm nerves in the area and reduce pain.

6. Supplement with a high quality calcium/magnesium formulation, about 1000 mg. of elemental calcium a day, 500 mg. of magnesium. Magnesium calms the nerves and relaxes the muscles. Good formulas are mixtures of mainly organic, chelated, or acetic salts. You need supplemental vitamin D, about 1000 units, to utilize the calcium and magnesium. Use the search function of this forum for a lot more about magnesium.

7. Meditation is practice in directing the attention away from where you don't want it to go. After six months of daily guided meditation practice, mediators have a much increased ability to deal with severe pain, as opposed to the severe pain dealing with them.

Meditation, healthy diet, supplements, and exercise (including yoga and tai chi) are more of a long term fix, but all help, and all work together to make each other more powerful and get the breakthrough pain reduced to tolerable levels.

I'll post this in a separate thread, as it might help other people.

David
 

I read this on the other forum and which cancers does this reduce??
And Tai Chi is beautiful but once again would have to be in chair
or be on my but chi. Thank for your good wishes D,this to shall pass
(won't it) :) Sue PS Hey Joe how youse doing pps i was thinking
D have you had your Thyroid checked?

ive had the blood tests for thyroid. why would you think i need it checked?

I think she may of meant me about thyroid? I may be wrong.I think sue wanted to know how you were feeling? I went to the endo and she didn't so that unless it was done by the other doc in the multiple blood testing or maybe the endo did in her bloodwork or the urine testing? I'm sorry if this is stupid but I thought if thyroid problem weight was an issue. I will say before this in my recovery they were concerned because of the amount of calories I needed for weight gain and it was an extreme high amount. This is sometimes normal for recovery but not usually at the level I was on. Also I had and did complain about the liquid I drink. On average about 5-6 liters and this is being unactive. I told everyone doc wise but of course no concern.
Wing thank you so much and for your email too. I will respond about some coping thing on that thread so others can see. I really found your response so helpful. You should teach a class or write a book.

Im doing ok Sue thanks. Its a waiting game now of going back every 3-6 months to see how things develop or not.............Im more of a tackle the problem head on kind of person, no matter how big or daunting. Im not good at long term wait and see hanging over your head kind of things, like PN..hah....and now pulmonary, guess this will teach me a lesson on that.
Thanks for asking, in the four years ive been here you are one of the few who has asked. I hope you get some good answers yourself on your tests.