I've been waiting to post this hoping I'd get better.....My SFN is changing. I'm up to 2400 mg a day of gabapentin and will start my last increase on Tues to 2700 mg a day.

For the last 2 or so weeks my symptoms have gotten worse and the pain has spread up both legs and to my hands. My legs also tremble when I stand in place and my balance is way off. My slightly swollen left ankle and outside of the same foot is still there and now my toes on that foot are swelling. I've noticed a tightness in the skin of both feet...worse in my left. The swelling started at the end of Sept....I went to PCP who sent me to orthopedic dr who did x-rays and said bones were fine in both feet and ankles. Thought it might be tendonitis (he saw me before the toes started swelling)...gave me a big black boot to wear..which I can't because it makes the pain in that foot worse.....and told me to go to my neuro and see if he wanted to give me any type of meds for it....went to my neuro and he said neuropathy does not cause swelling and he doesn't treat swelling.....that was Nov 5th and I just gave up trying to get a diagnosis on the foot.

I'm really concerned about the swelling and why I have it now. The pain on the outside of my left foot is extreme. Even when I'm off the foot it hurts....both feet hurt but the left is much worse. I've had heart ablation due to high PVC's...it helped but the chemo has increased them again. I've got all these thoughts running around in my head about what it could be and of course none of them are 'great'.

I do have an appointment with a new onocologist on Tues. My GYN was livid when she found out I've been 'searching' for answers on my own and no dr is actually helping and tracking my progress. She says the onco I have now will not work with her or anyone outside of Emory. She's been my dr for over 20 years and cares for her patients very much. The dr she's sending me to works closely with her and she said between both of them they should be able to help me get a good combination of dr's to help me with the SFN and stay on top of my cancer checkup's.....I've only had 2 so far since chemo ended in March and I have a long way to go before they mark me as a 'success'.

This new dr has all my records and will read them prior to my visit on Tues. I've heard wonderful things about him so I truly hope this will go well for me and I'll finally have the dr support that I so badly need.

Just feeling very down with all these unknowns on my shoulders. I'm usually very upbeat but I feel beaten down today.

Thanks for listening my friends.

And get this.....my last onco visit was on Nov 18th....I've been seeing this man since Dec of last year and he oversaw all my chemo treatments. I did go to him when this SFN 'hit' me in May to see if the chemo contributed to this and he brushed it off. Also told him I had filed for disability and he wrote that I was unable to work, shop, clean etc......he asked on this recent visit if I was any better and I told him no and that I was working with a neuro. I thought he was a nice man and always talked with me and my husband about fishing and stuff while we were in there. I mentioned that my daughter and son in law were taking us to FL after Christmas for our Christmas and anniversary presents.....when I got his records from that conversation he said.....still unable to work, shop, clean but looking forward to her trip to FL in Dec.....he didn't bother to ask how I was going to make it down there........which will be in the back of our Rav4 with lots of pillows and blankets......and I may never get to leave the house when we get down there. I have absolutely no idea how I'll do. We're taking a wheelchair that was given to me in case I feel like going anywhere. I was so angry with him and myself...why can't I keep my mouth shut ? Why do I think they are all nice and caring ? Maybe I took what he wrote the wrong way but it ticked me off good and plenty.

Ok....now I'm done....if I've repeated myself from other threads pls forgive me

Debi from Georgia

You have to be very careful what you say to doctors, chiropractors, eye doctors, you name it. They write down everything - and I mean everything said. So I have learned to keep my mouth shut. Some seem really nice but they still are writing everything down. It is not like the old days. Hope you find an answer.

This is a possibility... hyponatremia.

High dose Paxil (SSRI)
Antiseizure drug (gabapentin)
opiates (for pain)

All are triggers for affecting sodium levels.

These links explain mild hyponatremia exists and is not identified by doctors until it becomes extreme and life threatening.

Please read the links on this new thread:
http://neurotalk.psychcentral.com/post1033133-4.html

This condition is very complicated...you probably won't understand it at first. Many doctors don't understand it either because of the complexity of it.

But increasing problems with increasing medications, should be looked at holistically and may not be PN at all but something else.

I have had low sodium problems that started during chemo. I got down to 128 and they told me to use more salt. But.....I am a big drinker of fluids....I always have something to drink with me. I do love my salt.......so am I drinking too much which is causing my sodium loss ?

I'm going to mention Hyponatremia to my new onocologist dr on Tues. Hoping he looks at my feet.......can this just happen ? Even if I was not taking any new meds at the time this started ?

But you made me realize I'm right...I NEED to know what is causing the swelling. My left foot is just throbbing/hurting now.....I took the dog outside, had my feet up some but that's all this morning. I'm just tired......all over really tired.

Thanks for the replys

You know....I also had a bladder mesh thing done when I had my hysterectomy done last Oct...when I went a week later to have the cath removed I was retaining fluid in my bladder......my gyn did an internal ultrasound this past Sept and asked had I "relieved" myself fully and I said yes.....she stated I was retaining quite amount of fluid in my bladder.....wonder if that could have anything to do with this.

Debi from Georgia

If you drink too much water...yes that causes one type of hyponatremia. There are just several types.

I looked up gabapentin, and while it is less "likely" to cause
hyponatremia, there are reports that it does.

When you take more than one medication that is a known agent to cause this, and they add up ...that is when the problems come.

So please get tested... and drink a little less water and see if anything changes. If you are taking a diuretic? For that foot?
That would be drug #4...in your list.

Debi, I am so sorry to hear how much you are suffering. It does seem like that is a lot of Gabapentin, and it does have side effects, sometimes it doesn't really help either, certainly not with the severity of symptoms you are experiencing. The fact that you are deteriorating as it increases seems suspicious.

Oh what Kitt said is so unfortunately true! My doctor has been great and I often mention how fortunate I am to have him since doctors are reluctant to take chronic pain patients, particularly with progressive, lifetime, untreatable diseases. October's visit was a nightmare, he was cold, distant, and disapproving, I thought i needed to find a new doctor. This month we were back to normal, he was thoughtful and considerate.

The source of the problem seemed to be that I have said I needed more pain medication when my daughter comes and I am carrying, rocking, picking up my grandson and waiting on my daughter who has back problems and is pregnant.
He came back at me saying that I always had excuses for needing more pain medication. Now I never asked for more, I just explained the patterns of how I use what he gives me, but that word "excuses" got under my skin! You can bet I am a lot more careful what I say. They respect false stoicism more than honesty, and you have to be more consistent than is humanly possible.

There have been lawsuits over the mesh implants. Perhaps there are complications from that for you.

Debbie
First of all, I wish you a nice time in Florida for the Holidays. Hope all goes well.
Second, regarding your bladder and urinary retention. If you have extensive neuropathy, it could be related to that. Do you have autonomic neuropathy? Have it checked out with a urologist. Perhaps it is neurogenic bladder from neuropathy. There is medication for that, but onfortunately, they have much side effect. However, I hope this problem resolves.

to Debbie and Susanne
yes I agree so much with you regarding the doctors. I wonder how they can get away with saying and documenting in the medical records things like that??? I try to always check back with the doctor's office after a week or so, so I know their notes are typed up, and I get a record of the doctor's note. I do think that if there is something you want to dispute, you could have records changed.
Best regards
Synnove

Debbie
One more thing, did you see a rheumatologist? Could you have swelling in your foot from Arthritis? Is the swelling in the tor joints?
But then again, I guess that would have shown up on the X=
rays you had. Just a thought

Hope you feel betteer soon

Another thought for the Hollidays:

I hope every one gets to do some of the things they realy cares for. Just be careful, do not overdo it. And I sincerely hope you all have support from friends and family.
Happy Holidays
Synnove

I'm pretty sure the swelling is the tendon in the left side of my foot and ankle. The 5th metatarsal thingy MrsD told me about in a previous post. But now the toes are starting to swell so who knows ? I've just missed so many things in the past I should have been aware of I'm trying to cut anything new off at the pass !

I'm hoping that since my gyn wants to make sure I'm being taken care of for all my issues and she called the new oncologist directly to get me in before the end of the year I may have some hope of finding out what this swelling is. She said she would talk to him at length after he sees me on Tuesday. What a weight off my shoulders that would be.....THAT would be my Christmas present for sure

I do want to ask y'all about the gabapentin. The neuro I have seen just twice....said some people have to get up to over 5,000 mgs a day for any relief ! I swore I keep seeing that 3,200 or 3,400 is the max. He asked me if I thought it was helping. I told him I honestly don't know. I still hurt and cannot function but who's to say if I stopped the gabapentin I wouldn't wind up in a fetal position on the floor from the pain ? This is all so confusing. The skin on both feet is tight and shiny but only one swells. To tell u the truth I'm just plain scared. Guess since I've only been dealing with this for 7 months I haven't gone through all the 'mind' processes yet. I feel like a lost puppy....my gyn said I had just been set 'adrift' by the medical community....sounds about right to me.

Thanks and please keep the info coming.....all your replies really, really help me keep a hold on reality when I need it the most.

Debi from Georgia