Going down fast, now in hands
 

I can not believe how bad I have gotten in a week. It has never been this bad. I can't sing my way out of this, pray my way out of this, pop pills and supplements, nothing. I am sinking into a deep dark pit. I have not slept in days, when I do it is for 20 minutes at a time. I can't function. I keep my feet in a bowl of water constantly with bags on my feet to protect my skin, nothing else works. Life has come to a complete and total stop.

I have never experienced non stop pain like this. If I am lucky I get 20 minute breaks. Most times when I do sleep I am sitting up in a chair with my feet in the water.

Worse of all, it is moving into my hands. I have tried to deny it to myself, but I just cant anymore.

I give up. Drugs and comatose sounds better than this. Now, how to find a doctor? Do I need a neurologist? Do I have to have a referal or can I find one myself? I don't trust the general doctor I have to give me a decent referal in this small town.

Im so lost and even my faith is not helping right now.

Are you taking that iodine treatment? I think it is time to stop that for now. Iodine causes skin reactions.

I stopped everything today. Everything. Nothing works anyway.

Stacy, I am sorry. It could be that something is making your hands sensitive.

How much Alpha Lipoic acid do you take throughout the day? Have you read about Berberine and NT Energy Factor? (phospholipids) I am hoping this will turn around for you.

I am posting at an EM forum also and they agree with me it was the niacin that sent me into this abyss. Now I am in a vicious cycle and cant get my feet out of the water.

I have never been so low in my entire life as I am today. I can't talk without crying. I am supposed to call someone about this but I know I cant have a coherent conversation right now.

What is Berberine and NT Energy Factor?

Time to get to a doctor for some advanced testing.

I am working on it. I just spoke to a lady whose daughter had this, she got it while pregnant and the spent the money for a phone consult with dr kohen, I think thats his name, the guy in the link here in the old thread.

She is making some calls to her doctors to see if she can find one for me close to me.

I felt no comfort talking to her, it sounds as if her daughter went through a hellish ordeal before getting it somewhat controllable.

Im trying to stay calm as stress makes it worse but with everything I find out it only gets worse. Her daughters story was like a horror story.

So, now I wait and see what if any dr she can find, if none, then I start on my own.

I cant remove my left foot from water at all and its swollen so huge just like those pictures.

Sweet Stacy
 

How you doing ?

Please give us an update.

Debi from Georgia

I hope you have decided to go to an ER.

You could have gout or something more
complex. Or more than one thing going on.

Do not use that infrared dome if you were
doing that.

I hope you can find a moment to update us.

Stacy,

I hope you are doing better. I saw on your post that you feel niacin was your trigger for this. I recently read that excess niacin (B3) is metabolized by methylation and thus uses up methyl groups. So if you have an issue with under methylation and are lacking in methyls, then niacin could have further depleted them. Restoring them may help if this is the case.

I hope you get back on track soon and get some relief.

If you can, please drop us short note letting us know if you are ok.

You have many here that are thinking of you.

Take care!!

I am truly sorry to hear that you are dealing with such terrible pain Stacy. I am also thinking of you and hope that you find some answers soon! CeCe.

Thank you all for asking. I have an appointment with my stupid primary care doctor tomorrow, he wont give me the referal I need without seeing me first. I found a neurology doctor willing to get me in asap but we have to wait for my dr to give referral.

Thus begins my journey of testing as you all have gone through.

Last night was my best night, God brought a guardian angel to me from the EM place I post, she was amazing, she even called me and helped move things along with the neurology doctor. A complete stranger spent hours with me yesterday and last night on the phone. Her suggestions got me through the night last night.

I got on a vicious cycle using the cold water in bucket with my feet, and I knew it but had no other way to get relief. Through her suggestions, finally at 5am I was able to remove from the water and put them on a chill pillow for several hour and still doing ok.

Swelling comes and goes, never goes away completely and sometimes is awful. Going to the ER is a waste. I will go to my dr tomorrow then the neurologist hopefully next week.

I am less frantic now that I have a plan of action. I still feel great fear and doom knowing what is coming, but this is my life. I am trying to relax and breath as I think stress makes it worse.

Tears are useless but they keep falling, more for the situation than pain. Today is a new day and I know the Lord is with me, leading me, sending me angels in disguise.

thanks everyone!

So glad to get this and learn about the relatively good night. I think there were many, many thoughts and prayers beaming toward you last night. And yes, thanks to the stranger-angel. This web site is more than a "chat board." Same with the other one where you posted, evidently.

Okay, sounds like a plan.

At least you are not worse. Keep us in the loop....please.

I would not call last night a good night but so much better than the previous nights. I finally did get a little sleep. Before I got none, maybe I would fall asleep sitting up with my feet in a bucket.

Im still on my couch no point in and out of a bed all night, cant really lay down constantly doing something to adjust, but yes last night was a relief to sleep a couple hours laying down instead of sitting.

First time ever seeing a neurologist what will they do to me first? Anything to help ease my fear of what is to come?

Also, my doctor tomorrow may offer pain meds to get me through until I get an appointment with other doctor, any specific pain meds I should ask for or avoid?

I hope you can see someone soon and they will be able to help quickly. I am glad you got a bit of sleep finally.

Hope you can figure out what is going on, like previously mentioned, could be something like gout. The Neurologist will probably start with a lot of questions, mine grilled me for about 20 minutes, then did a physical examination of reflexes and muscle strength. May dod a nerve conduction test, but not during the first appointment.
Good luck!

Yes, I'd make sure gout is off the table as a trigger.
Especially if you still take that hydrochlorothiazide as a blood pressure medication. It is known to cause gout in some people.

Some doctors give calcium channel blocking drugs for EM.

Hi Stacy,
I'm so sorry to hear you are going through all this pain.

How did your doctors appt go?

A few suggestions, prepare for your neuro appt.. Write down all your symptoms (everything) so you can go over it with him/her. Also, any questions you may have or thoughts on testing and treatments. Don't be worried about doing this. Most doctors like it.

They will probably want to order their own test. Even of they will duplicate what your GP has done. Most will do an EMG, blood work to begin with. The EMG probably will not be done the first visit. It's a process. They rule out everything they can. It can be trying to go through but it is worth it. It did give me some answers and took away some of my concerns.

I hope you get your answers. Even if they don't find out what is causing your pain, hopefully they will be able to reduce your pain to something you can live with.

Please let us know how you are doing. You are in my prayers.

Hopeful

Hopeful, thank you for the tips and prayers. I want you to know I have been reading your post about getting off cymbalta and while I can not imagine that kind of pain, I understand daily pain. You and everyone who lives with constant pain were in my prayers last night and always. Before PN I would tell people who had pain or terminal diseases I would pray for them. I never understood. Words. Just words. Until you live with debilitating pain (and mine has only begun to this extent but knowing its forever....) until you experience it you can't possibly empathize with someone. Now, when I say I am praying for someone with pain, I can almost feel the pain while I pray.

Yesterday when I got to the doctor they called the referral in and that was that. Nothing else was needed. My appointment with the neurologist is April 23.

I guess yesterday was my blessed good day to give me hope, as the darkness descended so did all the old pain and water bucket and today is not real good either.

I honestly do not know how people survive life long pain with no hope of it ever ending. This is definately a new phase in my life and clearly I need to figure out how to accept it.

I pray you are having a blessed good day today.

Hi Stacy,
I really DO understand the pain of which you speak. I don't know if it helps but I think when the pain was new to me, as it is to you now, I had more days dwelling on what the future may be. As time progressed I tried to learn to live one day at a time.

I'm in no way proclaiming to do this all the time. As a matter of fact, I just told my husband yesterday that I was afraid something was wrong with me that might take my life and they haven't been able to find it.

Sounds like i was really positive yesterday doesn't it:winky:

But on my goods days I remind myself that even though I have this pain I have a lot of other blessings. Today I'm back to taking it one day at a time. Every morning as soon as I get up I thank God the day. Every night before I go to sleep I remind myself of everything I'm grateful for. It works more often then not.

When I become too focused on what the future my bringing I remind myself that I believe in miracles! You never know many one day......:hug:

Wishing you a blessed and low pain day.

Hopeful, you are exactly right.

That is exactly what I have been doing, thinking of a future of this not really the pain in this moment. All I can seem to think of is many, many, more years stuck on my butt missing life.

You are absolutely correct, being thankful and learning to appreciate each day is exactly what I need to do. I guess this past week has been my "pity me" time and now its time to figure out how to live with this disease.

I did manage to get my appointment moved up to April 16 so that is good, I guess. Not sure what to take, expect or request. After 2 years reading here, I now feel so overwhelmed that nothing is staying inside my head, it has all flown out. :rolleyes:

Thanks Hopeful, for very encouraging words! You ARE blessed, for sure, even through your pain.

Hi Stacy
 

Hello Stacy. Sorry you are in pain like that. If you don't like your current doctor, do yourself a favor and start looking for a new one who can understand you, and whats more understands the condition you have. Without the medical field to help you, it is most difficult when pain dominates everything... A good PCP will give you the referrals you need. If you post where you live, someone on line here may be able to direct you to some doctor they know.\
Please don't give up, and keep the faith. I will be here to listen anytime. You do need a good physician. Also a physiatrist, (Not head doctor) may be another approach. Many do not know what kind of doctor this is. A physiatrist treats the whole person, not just a set of painful symptoms. Mine happens to specialize in pain. You do need referral for most neurologists, but I am not sure about the physiatrist. Take that first set and set up an appt. with a new doctor. Bring your written list of symptoms of pain etc. It also helps to have someone with you when you go. Doctors tend to listen a bit better when back up is in the room with you. Go forward, don't stop, there is relief and help out there, but you must find it. It took me several years to find the crew of physicians I now have. It was worth all the searching to have them. I will keep you in my thoughts and prayers. Keep that faith going OK? Write if you feel like it. ginnie:grouphug:

[QUOTE=Stacy2012;1062048]Hopeful, you are exactly right.

That is exactly what I have been doing, thinking of a future of this not really the pain in this moment. All I can seem to think of is many, many, more years stuck on my butt missing life.

You are absolutely correct, being thankful and learning to appreciate each day is exactly what I need to do. I guess this past week has been my "pity me" time and now its time to figure out how to live with this disease.

I did manage to get my appointment moved up to April 16 so that is good, I guess. Not sure what to take, expect or request. After 2 years reading here, I now feel so overwhelmed that nothing is staying inside my head, it has all flown out. :rolleyes:





Hang in there, and things will get better!

David in Georgia

:hug:

Hi Stacy
 

Glad to hear you are going for an appointment with a neurologist. I pray he will know what he is doing, and offer you some real help. When you have a doctor in your corner, this gets rid of much of the stress. If you can, keep a journal of all your symptoms. Bring someone with you to the appointment, as doctors tend to be more in tune with you when you do that. I will be praying for you too Stacy. ginnie:grouphug:

I tried to provide a detailed answer to this in your other thread: http://neurotalk.psychcentral.com/thread202914.html

now in hands
 

:hug:Please, even if you feel you're losing faith, God is always there for you and He believes in you. He can get you thru the pain.
Bless you!

Putting the pieces of the puzzle together...

Last week I had a good day then crashed again, now today another great day like that one. What is in common? I took my BP pill, the diuretic. I have been weening myself off this pill, down to 2x a week for a couple months now. I guess when I took it today and last week it takes the fluid off my foot and swelling goes down, less pain, less flare.

I am taking that dang pill again tomorrow. It is 7pm and I am usually in pain right now, but nope. Granted, if I stay on my feet too long they start to flare but less than before and I can remain up longer. I even ironed a pair of hubbys pants today.

I doubt this pill is my cure by any means but it sure is my miracle to lesson flares and keep my feet out of the water. Thank you Lord.

Ohhh Stacey that's great! So glad to hear you are having a good day. Here's hoping it is indeed the BP pills so you can take control of it. :)

Isn't it funny how we usually have to figure these things out for ourselves.

This is great news Stacy! I hope you continue to show improvement after all your suffering these past weeks-fingers crossed. I also hope that your appointment with the neurologist this week goes well for you.

This morning I took another pill, first time in months to take it two days in a row but I want to see what happens. Yesterday was good, hardly no fan but I still cant be up on them a lot. My night was better too, although, yes I still had to use water bucket, I sleep one hour wake up to swollen, huge painful flare, soak for 15 minutes and try to sleep another hour and the cycle goes until morning.

But last night was better because I could soak then no pain. Before even though I would soak, I would force my foot out of the water and it would still hurt, less swollen and less pain, but still hurt. Last night not so, last night the soak would take away the painful swell then no pain and back to sleep. So yes the night is still long and hard but easier than before.

Today is day 2 and again, doing better, no fan, no pain, good as long as I stay off them. Getting showered, hair and face done is like a track across the word, I am exhausted by the time I am done.

I am going to see a movie with hubby in an hour, hopefully all will be well. I need out of this house.

Blessings all.

I hope the movie was fun!

Getting out the house will probably do you a world of good, and will be worth the exhausting efforts to get ready. I hope that all went well and you enjoyed the movie.

Today was my neuro dr appointement. It was as useless as I suspected it would be.

She refused to even CONSIDER that I had EM and just said neuropathy. Then basically said we will test but end result is no cure just pain meds. She ordered blood tests from her lab and then ordered another set of blood tests that can only be done at one lab in the US and it has to be approved by my insurance before I can do it. Apparently it is very expensive. I tried asking several times what tests she was running and she intentionally was vague. I think it has something to do with auto immune but I dont know.

She said if my insurance approves the test they will send me a kit ??? then i take the kit to a specific lab to be drawn??? I dunno. If I ever hear from my insurance for it I plan to find out what specifically it is for since its soooo expensive.

Oh, and I got the drug garbatin/neurotin?? yeah.

Not any better off today than before I went. I want to find a doctor who will check/treat EM.

There is absolutely NO reason that you are not told what labs are being run!! That is absurd! When you go to the lab, I would ask for a copy of the order.

The neurontin is a very common starter drug for PN...and worth giving a try.

I know very little about EM, other then it's rare and difficult to diagnose. Did you have the pronounced redness/swelling at today's visit? If not, and it's something that occurs periodically, then make sure to take pictures to your next visit.

I don't know if you have many options for selecting neuros in your area (and on your insurance), but going with someone that comes from a recommendation is best. Do you know anyone locally that has seen a good neuro that could give you his/her name?

You may be one of the many that have some relief from Neurontin...I hope so. Keep us posted on your trial with it. Keep in mind it takes a little time to work up (slowly) to the right dose.

I agree, I should have been able to know exactly what tests were being done. I confess I was a bit of a mess and not my usual strong self. It was apparent from the onset that she was not open to anything and seemed to have a course of action from the beginning regardless what I said. Knowing that right away dashed any hope I had of her being a doctor that would listen, be open, and work with me. She had decided pain meds and blood tests and that was it.

She took a dislike to me almost instantly JUST FROM READING MY CHART. Even hubby agreed. She read my chart and asked why did you switch from the initial dr that diagnosed you with thyroid problems? I said because she would not prescribe NDT meds only synthetics. That ticked her off, I am not joking. I could see it in her eyes.

Then she read all the "natural" things I take, supplements, etc. and without even ASKING me a single thing she says...if you are against western medicine there is very little I can do for you. Swear to God I had not even spoken at that point other than past medical stuff. I said I wouldn't be hear if I were not desperate and ready to try.

Then later, she says ok so the only medication you are on is hyroclorthiazide? I said no, I am on naturthroid. She says I am talking perscription mediction. I said naturetrhoid IS PERSCRIPTION. It can not be obtained without one. That clearly showed me she was ticked for reasons I can not describe. She made a judgement about me and does not like people who treat themself naturally.

I felt defeated before it even began and lost hope. I didn't even tell her or ask her most of what I wanted to, hardly anything at all. I took the stupid womans attitude and let it defeat me. Once again, another doctor, intimidating, superior, attitude, made me feel insecure and kept me from having a voice.

Been there done that. Never thought I would allow it again but there I sat, taking the hits, and that is what it felt like, and because I was so emotionally strained, I let it happen.

I took the stupid pill last night, and don't get me wrong, I get it, I need pain meds, but what I wanted was a doctor who cared to dig into my situation to find the root cause and work with me and be open to things.

So I took the pill. Took it at 10pm slept til 3am. First time in a month to sleep 5 consecutive hours. At 3 the pain part wore off and woke to huge, inflamed, swollen, red foot. Limped to the couch and used water, but the sleepy part of the pill was still in affect and I fell asleep with my foot in the water...not good. No ice, just water. Went to sleep again on the couch. Sleepy affect lasted until almost 11am. All in all it was a good night, wonderful relief for 5 hours.

I will not take this every night, I am so fearful of the chemical addiction and having to up it constantly. I dont want to sound like a lunatic against medication, I am not. But if I live 50 more years, even 40, I have a long time to go and plenty of time to get hooked on all the medicines, might as well take my time getting there.

I want answers, I no a cure may never come, but I want a doctor who at least knows what EM is and is willing to read the dang material and consider it. I want a doctor will to try things. Or care. Or at least not hate me.

Sounds like you need to research and find a doctor more open to at least 'looking' at possible causes as well as a natural approach that can work in conjunction with western medicine. It can take a while to find a good neuro. I don't know of anyone that had that perfect match on the first go. As I said in another post, they are a rare breed and can be quite arrogant IMO. Not all of them, of course, but many.

I don't believe Neurontin will be very effective as an 'as needed' medicine (other then for the sleeping effect). It's meant to be taken regularly. And it usually has to be 'upped' initially just to get to the appropriate dose. Many can stay at that dose for quite some time, but others find that it eventually doesn't work after a while (but that can be years). I took it for about 4 years before I maxed out on dose and it wasn't effective any more. It wasn't difficult to taper off either. It's really an individual thing...as in all medicines are. Some have good results, while others don't.

I understand your anxiety about medicating for 40-50 years (I gave that much thought myself before starting to take pain meds)...but your PN will likely be there for 40-50 years , and I'd hate to see you give up treating it effectively NOW for the sake of future doses...when you may have the very same symptoms (or progressively worse) down the road. You'll never get back the time you missed now (possible pain free) if you chose not to treat it effectively. Again, just my opinion.

Talk to people and med centers about the neuros in your area. Do some research about them and try again. You're worth it.

And take pictures of your red swollen feet when that occurs. It's a very effective tool to take with you to appts.

Yes, it may just take a while to find the doctor that works with you. So glad you got some sleep.

Hi.....about that doctor
 

don't let one high and mighty doctor defeat you. I have had that happen to me also. My first neurologist wouldn't listen, and I actually waved bye bye and walked out with him still talking!!!!!!!!! I had had it at that point and I was not willing to listen to his attitude. His surgery on me failed, and he was not willing to listen to that. So....down the road, I had to have it done over again with 5 other vertebra. If he was so right, how come I had to have it done over again???????? Just goes to show you...Keep on trucking until you find that doctor who has compassion and is willing to listen!!!!!! The good ones are out there, and it takes some effort to find the best. ginnie:grouphug: