Dianosis?what Do I Have???
 

My symtoms seem like what everyone describes, and then they dont. My pain never gets better. If I lie in bed all day and never hang my legs down, then I will not be in pain (much). If I get up and just sit with my legs down, the pins and needle pain ( no numbness at all) and burning and stabbing start. If i try to walk, then it is all the above plus knifing and torture, with tight shins and a tight band around my ankles, like my legs are in a vice. then it moves up to my thighs and waist up to a level 10 pain. I had multiple foot surgeries, and prolotherapy injections inflamed my nerves to inlcude my legs and spine.
I didnt have this kind of pain in my legs until the injections 15 months ago.
So my nerves were so irritated they are permanently damaged? so they cant heal? no one knows, or they dont want to tell me. the neuro said this was for life. meds are making me sick. I want to try to understand what is going on so I can get some relief.
what do any of you think?
steff

Steff, While I'm no doc, not by any means...
 

There are four basic types of neuropathies...in the simplist forms they are: Ideopathic [unknown/not a clue] Immune, Toxic and Traumatic. I'm gonna guess you fall the the last category? While the trauma isn't pain from severed nerves resulting from a car crash or a fall down a flight of stairs or the like...you've probably had some nerves damaged or destroyed from your surgeries? Well, how and who is gonna determine this? Someone from the same practice? I'm gonna bet IF you can find copies of the papers you'd signed for those foot surgeries...you probably signed your life away in terms of getting any 'satisfaction' from that quarter.
While I got very lucky and actually got a 'diagnosis'...treatment of that and other overlapping issues is still TREAT THE SYMPTOMS...Many nerves can still regrow and reprogram to work better than not having any nerves at all. Just keep in mind that a zillion miles of nerves can DIE in minutes! They re-grow about a 'centimeter' - a quarter of an INCH per month.. They only connect and work right IF we make sure our diets, supplements, and EXERCISE is of the nature to help them grow and work best. The only suggestion I could think of is that you go thru www.LizaJane.org s sheets and see if you have been tested for anything auto-immune...the reason I suggest this is that I too had 'neuropathy' but it kept spreading..It too is almost to my waist. It could be your 'trauma' had triggered some other stuff.....possibly with a cold or flu in-between? to go into some sort of overdrive.
The very, absolute LAST thing you need to be is SCARED! While it's a totally frightening experience to live thru this all...It MUST be your motivation to learn more of what has been tested for you and what yet needs to be done! PUSH for those tests...If your docs won't allow or go for it? Go to the biggest best teaching hospital you can get to and GET SEEN AND TESTED THERE! ASAP![Ask to be put on any cancellation lists to get there] I found that having some big-whig testing and conclusions somehow 'motivated' my own neuros to do what needed to be done.
I hope this helps...I can feel your frustration in your words...Many of us have or are 'there' in different forms. I know you will keep us up to date! - j

HI Steff!
Gosh you sound SO miserable! Your pain must be dreadful! I sure feel for you! I know how frustrating it is to not know whats causing the pain and just continue to pay dr.s and do tests without good results!
It does sound like the surgeries you had have caused damage to your nerves. I hope your dr. can figure out some pain meds that will help you. Maybe you need the epidural or some other the "spinal cord stimulation" that I saw in a pamphlet at my dr.s office. They run a cpl wires up your spine and send electrical stimulation up them......sounds similar to a TENS unit but internally. It's for chronic pain. Sounds like by this point you are ready for any type of procedure that will end this pain.
Take care.......Hope your Sunday hasn't been too painful. Thinking of you........

thanks both of you-
I am thinking of where to go next.
dont want to do spianl cord stim-real bad news about that one with all my problems-
steff

YOu say that, but I know of others...
 

who have gotten a great deal of relief from the systems... Tho for some it takes lots of adjustments...
On the one hand anything for relief? On the other hand, what programs for any relief are the safest?
Honestly! Neurontin is NOT the only way to go!
Keep faith and go be your own advocate - no one else can do it for you! -
:hug: 's a plenty! - j

Ok honey
 

Do to recent mistakes serious ones,i can no longer speck up the way
i was able to or even felt the need to. Let's say those who were there
to help me did a great deal of harm.. My name is Sue and all i can advice
is give us your area,(if you want) perhaps we can tell you of a good Dr.
in your area,i live in Columbia, Mo. We have people from all over small
as well as large cities in US as well as peoplr from UK just a lot of places.

There are many kinds of foot surg. and spine,so on. More detail about
your problems..I always say i was a nurse but once one always one. But
things change so much nd so fast,i allowed myself to be harmed and very
badley. To the point of having to slow down. Be i will help in anyway i can.
You aready have been giving good advice and will get more.. Believe me
you have a family here if you want and need them,and we both know you
do.. I have family who love me but right now what and who i need is my NT
family. And you because i think just a little way down the road you will
be able to help others. I will be keeping a eye out...Pain is awfull,just
awfulll. I will be in and out of the hospital and also in PT..I am going
to sell some things so i can get awireless computer,because i miss thease
wonderfull people and need to be in touch.

Now no more running over your problem,i just want you and anothers to
know i care...Keep posting for help,i'm keep listening and i know we will do
the best we can.. Please free free to e-mail or pm,but to you who have
and i missed,i'll catch up. Ok let us begin :eek: Sue

to all-
it was the prolotherpay shots that fried my nerves. of course they were all ready on edge. but i walked from one end of the mall the other (in a four pain) the day before i got them. now i have to use a wheelchair if i can even go at all.
so now the next step is to try cymbalta. which i am afraid to do becasue i have heard so much neg.
have already had reactions to lyrica and neurontin.
i live in Huntingotn beach, ca. whoes the best to see in my area?
ucla, usc or uci or?
i have seen two of my own docs and no one can agree.
thanks-steff

Hi. I'm sorry for all your pain. They were talking about the stimulator for me too or a catheter. The catheter was so that I could do extreme reabilitation on my legs that are my issue without so much pain. I know you fear the Cymbalta and I understand as I had bad issues with neurontin,lyrica,elavil but cymbalata was fine. I'm up to 60 and the first few night were bad of nausea but now ok. Just make sure you take it with food. I'm not sure of the tests you have had but some of mine I had repeated and it then showed more. Feel better and take care

Hi Steff:

I am not very familiar with prolotherapy, but understand the injections can consist of various components. Do you have any idea what was used in your injections? Or can you find out and let us know? The doctor's office should be able to provide you with this...

I am so sorry you are suffering like this. You have picked a good place to come to though. You will find a lot of information and ideas here and hopefully, someone will be able to come up with some suggestions to help you out...

Cathie

the injections had glucose and lidoncaine, possible phenol. the doc is not sure.

Hi Steff:

I am no doc, but I do see from the website below that the prolotherapy is supposed to work by causing inflammation. If it is indeed responsible for your problems, does your doctor have you on any anti-inflammatories?

I also noticed that sometimes they make the solution stronger, therefore causing a more intense inflammatory response. Do you remember if this was done in your case? Still, though it would seem if there is any connection between this therapy and the treatment, that anti-inflammatories would be something you might want to discuss with your doctor, since the site specifically mentions anti-inflammatories.

Over the counter anti-inflammatories (Ibuprofen, Acetaminophen, etc.) probably would not do much for you, with the intensity of pain you are describing. Usually, docs start out with a prescription non-steroidal anti-inflammatory and see if you respond to that before moving on to more potent drugs. I don't even know what non-steroidal anti-inflammatories they are starting with these days.

At first, I was on Relafen, Feldane, Indocin (Personally, I would stay away from that one.) Maybe some of the nurses on here might know which ones are now being used. Prednisone (a steroid) is a very potent anti-inflammatory. Sometimes a Dose Pak (steroids) can be prescribed to see if your condition responds to steroids.

While I do not promote Prednisone, because of its long term side effects, I have responded to this, although I wish I did not have to take it. If inflammation is a key, then it may well help you. A short course of it may help and not put you in a situation, like me, where you are unable quit taking it, because your body depends on it, so to speak. Long term is a different story...

http://www.prolonews.com/how_to_opti...olotherapy.htm

I was curious about one thing. Is the doc who treated you with these, the same one who is treating your for PN? Also, I would think the records of the injecting doc would reflect specifically which solution was injected in each of these treatments... Have you asked for copies of records?

Cathie

answer
 

took anti-inflamatories of all the kind you said-3 months after the injections when i could see that this was not going away and, at first, i didnt know what was going on. i was so depressed that this had happened so wrong, that i stayed home and did not even go to the doc. THE PROLO DOC SAID THIS CANNOT HAPPEN-BUT IT DID, DIDNT IT!
OTHER DOCS SAID I NEVER SHOULD HAVE BEEN GIVEN THESE WITH MY HSTORY
I TRUSTED AND WAS LITERALLY BURNED
my neuro doesnt care was injected then-ths is now he says=it has been 16 months-he thinks i was a fool to have tried this. the web site and all the info and the two docs i talked to all were so convincing are they? well i am crippled now-cried for two hours in burnng agony today alone. never left the house.thanks for the suggestions-
anymore?
steff

and the prolo doc-he still says it is not neuropathy, and he did nothing wrong, where three other docs say absolutely
meanwhile i am burning in a wheelchair!!!
this is not gong away-if it was going to go away, it would have slowly been doing that by now. if anything it is getting worse.
i am desperate.. this is unbearable-it is not regular p&n. it is intractable pain.
steff

Is anyone giving you anything to help with your pain? Can you remember what medications have been prescribed? Anything help at all?

What kind of history are they referring to when they say you should never have tried these with your history? Do you have an autoimmune disorder?

I too suffer from a lot of burning pain. Your doctor must work with you to find something to relieve it, or you must find a doctor who is willing to do so.... The universities you mentioned-is one or more known for work with neurological disorders? This is where I would start and if possible, ask your regular neurologist for an immediate referral, since this may get you an earlier appointment.

Has anyone reading this heard of others who have had adverse reactions to this kind of therapy? If so, can you please provide some details or suggestions on what might help?

Cathie

Steff, it would be easier to help if you would tell us what you have already tried for pain. Fentanyl patches, Lyrica. methadone, what???????

background
 

I had multiple foot surgeries, then fibro, possible nerve or central pain. was getting older, had more pain in feet tried the shots on my own with no advice from reg docs-idiot me-
16 mo. later-
have tried lyrica-broke out rash-
neurontin-throat choke-
now they want to give me cymbalta-but i read so many bad things about it that i am afraid-
also gave me the fentynal patch-but it said you could stop breathing if you were not already on strong opiods-
i am only taking one or two vicodin a day (just numbs the mind)
it was a scary jump-doc said she had no idea how it would affect me- so i dont wake up? oh wait-maybe that would be better!
have you read the warning label on that patch -dont look at it sideways, laughing is not aloud, get a tan in a coffin-i am joking here-but you get the picture
other cymbalta doc gave tramadol to take with the cymbalta-
pharmacist says absolutely not to combine those drugs as you can get seretonin syndrome, so i havent started either as i was suppose to start the cymbalta first-have you read about that drug? lst doc said it doesnt help that many people. these are a pain doc and a neuro-the neuro says no withdrawal from the cymbalta-why are so many people saying different?
dont know which one to trust since neither seem to agree and both have precribe incorrectly.
now i need to figure out who to go to that is covered that i can trust and i am frozen with doubt and fear at making another mistake-
been on the attidepressants years ago and they didnt do a thing- trying to get courage to take the cymbalta-but need a buddy here with me so i dont freak out (suicide warnings on box-and i am pretty depressed)
so am i crazy now -yes! ive got myself into a corner i know-
i need pain relief of some kind-what is the trade off? lyrica if i could have continued helped a little, but i couldnt take it during the day and think straight and gained lots of weight and became prediabetic and high chol.
what if i become crazy when i take the cymbalta and hurt myself or need to go to the hospital? maybe i should go sit in the hospital and take it. i have thought of doing that. and will it be the miracle cure? i doubt that.
so this is where i am at with drugs and my mind-
earlier in my life i was tried on many things for the fibro and none helped with pain and then i got addicted to zanax and the withdrawal was going to hell and back.
sorry to ramble- i think i said it all
stephanie

Steff,
I was reading here and wondered if you had read anything about RSD?

burning pain, swelling , skin changes, rashes are just a few sx of it.

It can come about from any injury even a surgery or a minor bump at times.

it just might be something you want to read a bit about.

RSD pics- http://neurotalk.psychcentral.com/sh...ad.php?t=16167

useful links- http://neurotalk.psychcentral.com/showthread.php?t=247

main RSD forum - http://neurotalk.psychcentral.com/forumdisplay.php?f=21

rsd no
 

did that for the rsd-dont have it-skin and temp are fine, the only swelling is the tissue made from the prolotherapy injection or the irritation built up of tissue reaction to it , not real swelling.
thanks though
steff

Steff I have pn in my legs but my treatment is like the treatment for rsd that means I have to keep mobile. I don't have most of the rsd symptoms either. I'm not saying that is you but I do know if its is you really need to get aggressive in treatment. As for Cymbalta. I have had very severe depression/anxiety in the past where I did end up inpatient and hospitals and I take cymbalta and didn't have any issues with suicidel from that med just the nausea. I understand and hear your fear but it may help and cymbalta is for depression too. Could you stay at a family or friends while starting it? It may not be a miracle cure but you can't give up. Trust me I have those moments and when the pain is severe its hard to see hope. Ask them here I was a crying wreck and still have my days. I know for me having my mom get docs and treatment help for me through those hopeless times was so important. I hope you stay safe. I know how hard it is but you have to think too of the loved ones in your life. I have many days that just thoughts of my mom get me through. Sending thoughts and wishes and if you want an email buddy I'm here.

Steff have you thought about going to a psychiatrist? He could give you good advice about the Cymbalta, annswer your questions, and monitor your reaction to it. You seem to have a fair amount of depression and anxiety there (understandable). I know it gets frustrating going to all the appointments, but persistance can pay off. All medicines can have side effects, but..... our only alternative is to not take anything that might help us. I hope you are able to find something that helps you. I was without meds for over a year and it was awful. I am so sorry for you.

I think both Daniella and Dakota have good ideas here. However, if this is the result of an inflammatory process, someone needs to address this part of the problem. If inflammation is causing the pain, a more agressive approach may need to be taken for treating this, which in turn may give some pain relief in itself.

If you are going to start on some of the drugs mentioned, it is a good idea not to be alone considering your depression. Anyone can correct me if I am wrong, but I believe that a psychiatrist is usually more than willing to try and work out a regimen for pain treatment, but I am not sure that this would be the right person to address the inflammation issue.

I went to a psychiatrist early on after being diagnosed with PN. She was just wonderful and tried her best to help me with the pain issues. However, my problems are basically due to inflammation and she wanted me to address this part with my Immunologist.

If you respond to this post, I will be out-of-pocket for a few days, so hopefully others will post here with other suggestions.

Cathie

Rsd
 

You might want to check the reflex sympathetic dystrophy board, as it sounds as if you might have RSD from the trauma. Have you looked into that possibility?

no rsd
 

i do not have rsd-no swelling, no color change-just pain -11 am still in bed. dont want to walk on my burning stabbing legs and feet.
i am going mad.
steff

Like I said I don't have those rsd symptoms either but that my treatment is the same and how important it is for me to be on my legs. I was in bed for 4 months in the worst pain crying through vicadin. The only time I got out was very small errand. I had similar symptoms and still do but I had to push.Now I'm out of the bed full days and even am up to a short 15 minute walk. I'm in a lot of pain but from where i have come progress. I'm not saying this is for you but if I didn't gradually push myself through the pain and out of bed I feel I would be in the same place. I hope you follow up with more docs. The people here are very smart in what they are telling you and have been through a lot too. I'm sorry for your struggles but don't give up.

Steff:

Can't your doctor prescribe something for you. Many here take the fentanyl patch, or neurontin or lyrica.

You don't need a pain management doctor (that is if you can't find one near you). Any competent physician can write a prescription.

Here's hoping somebody relieves your pain.

Alan used to use the Lidoderm patches on his feet. He would wrap them around each foot. They worked.

Mel

I think that someday medical science will find that foreign material is not accepted well by at least some people's bodies... As I read other postings on these and other forums, I see a number of people with PN who have had foreign material placed or injected into their bodies. If there are no other factors to consider, I would be highly suspicious of this as a cause.

Whether it be an inflammatory response, a metabolic or chemical response, you still have to have something to give relief. Since prolotherapy has to do with an inflammatory response, if it were me, I would pursue seeing someone who deals with inflammation and hope that he/she could prescribe something to help control the inflammation...

I am so sorry you are having this trouble. I hope that someone will help you with this. Do you know if any of your labs have included testing for inflammation?

Cathie

inflam
 

i think that depression has stopped me from seeking help. when i go to the docs they all seem so hopeless. i will ask for more precise blood and a nerve con study. i am going for a second opinion too.
thanks

I think you have stated something that is a problem for a lot of us. I know it has been for me at times. That depression can keep us from seeking help sometimes. I know that has been a problem for me. We have to be persistant, but it is hard sometimes.

I understand and here you depression. Do you have supports to reach out to? I know how hard it is not to give up hope but you can't. I have to remind myself and today is super hard that people do get better and live normal lives. Its just about finding what helps you. I know you have not wanted to start new med but it also may help with the depression. Havey you thought about therapy too?Take care.

Steff DO go and not only ....
 

make that appointment for a second opinion, actually GO! No matter how hard or impossible it seems. Those wiser and with far more complex medical issues have given you their take on your situation. I do however KNOW that occasionally you can find a really sensible Doc who can connect the dots of your issues and likely help. I also know, that the depression part of what comes with all the pain is a very real and true demon. One big bad critter that all here have encountered to some degree or other. Our lives change! Period! One day we are just chugging along with our lives and then POOF! Life suddenly has to be totally redefined.
Our nerves [all the millions of miles of them in us] can die in seconds. They regrow - each one of those very many nerves [IF they can regrow-or new ones which are totally clueless about what to DO while growing and then connecting] grow at about 1centimetre per month. Less than 1/2 an inch for EACH.
We have to work to move and keep new ones learning and damaged nerves 'remembering'...It HURTS and it can take years...depending on the extent and nature of the damage.
We have each other to support us, but we have to take the initiative and get a doc who believes the PROBLEM and then do what all there is that CAN be done for it. It right now, mite not hurt for you to take a look at the Chronic pain forums here - there are wise folks there as well, with less of a diagnosis than we have, but they have good ideas on how to 'cope' in the interim.
All I can do is give you a :hug: for now, it's not the same as a real one, but sometimes even a 'remote' hug doesn't hurt? Keep faith, persevere and go get THEM! - j