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Old 03-22-2008, 09:20 AM #1
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Default Its Been a Rough Week - Breakthrough Meds?

My PN pains & Sx's have gone up to a 7-9 lately, usually late at nite,
but at work during the day too. Daytime is the burning and squeezing
with pins & needles Sx.
Nites are severe, 'Charley Horse' type cramping of calves, toes,
arches, arms & fingers- and the sensation of bloated puffiness in my feet
( no edema or swelling noticeable, just the 'signal' of swollen) with harsh burning.

My meds have only been doing a partial job, mainly just cutting out early
to allow these Sx to occur. The meds do work for a short time,
I'm thinking that maybe I may need to get a breakthru med of some type,
but I never have had to have one, so I'm not so sure which type to use.
Just more of my regular meds?
But I'm at the daily max for both my Lyrica & Tramadol.
They're my only pain control meds.

We went out to dinner last nite, and wound up bar-hopping a bit -
to view some art shows at the various watering holes in the
historic district of town.
We were about 5-6 blocks from the car by the time we were ready to go home.
I was in such pain getting back to the car, my wife kept asking
if she should go and get it and pick me up, but I was stubborn
(I should have taken her up on it)
and by the time we got to the car,
she had to drive home- I just couldn't, my feet were so bad.
When we got home, the cramping started. Then the rest followed suit.
I was a miserable puppy for hours, even after I'd taken my nite-time meds.

What kind of B/T meds would I be considering?
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Old 03-22-2008, 09:30 AM #2
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Lightbulb are your feet swelling?

Are your socks too tight? Do they leave a deep impression on your lower leg?

That Lyrica is tough, causes fluid retention, which can sneak up on you.

I'd get a renal (kidney) panel run at the doctor's if you haven't been recently.

When you get fluid retention, it squeezes the nerves coming down thru the
tarsal tunnel. And this causes alot of pain.

I am always so sorry to read about flares like this. I've had them too.
This past summer I had the burning from Hades... and I sure hope I don't have
a repeat this season!

I'd also ask your doctor for some thyroid tests. Males are showing up with great frequency
now, with thyroid issues, whereas in the past it was less common. Lowered thyroid really
can affect the feet... That was my initial introduction to PN many many years ago! I didn't know
that then, and neither did the doctors pay attention. But when I finally was diagnosed, the
horrible pain in my feet resolved. Now I only have bothersome pain (and not everyday), not agonizing pain.
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Last edited by mrsD; 03-22-2008 at 09:46 AM.
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Old 03-22-2008, 09:54 AM #3
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Quote:
Originally Posted by mrsd View Post
Are your socks too tight? Do they leave a deep impression on your lower leg?

I'd get a renal (kidney) panel run ............
Nope ! I wear diabetic socks all the time, specifically for that reason.
The renal panel is a good idea.

I'm really bad about getting bloodwork done, because its a PIA.
I can't get it done at my doc's, cause the lab in the building
doesn't accept my ins.
I have to go a 30 minute drive, across town to the closest
"LabCorp"
to have blood drawn & I've been sitting on a lab requisition
since last Sept '07.
I've tried to go.... twice, but the wait was 2 hours or more each time, and I left. My lab work has to be a 12 hour fast, so I go early in the am, but have to get to work by 9. The lab opens at 7:30 and when I get there, there's already a line backed up. The lab is always short-staffed with the small waiting room over-flowed. So.... I've not been back. I probably have to get another requisition, since this probably has expired & they'll turn me away with one dated 9/2007. I'll ask my doc to include a renal panel too.
For me to get a simple blood draw, is a real pain in the BUTT !.

BTW, the swelling sensation, is just on the balls of my feet
and the fleshy bottom part of my toes (weird!),
not on the heel part, or the tops (instep), or at the ankles- at all !
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Old 03-22-2008, 10:14 AM #4
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Bob

I get that same feeling like my legs are too big for my skin...you described it better than I ever could....I am going to remember what you said, and tell my doc, in your words, what it feels like. I have it in my tibial area, not so much my feet....I dont feel my feet much, I don't think.

It is like you are stuffed into your own skin, and like a cactus turned inside out...one of those little fuzzy needled catci...and then like it is pulled at either end....and stuck in a vise, to boot.

I described it as being caught in a Chinese 'handcuff'. I don't know if people know what I am referring to.

You really are not on an opiate, as tramadol is an SSRI with a synthetic opiate type of medication. I don't know how you feel about opiates...I hate to be on them, but, I am at the point, where there isn't an option. I have additional issues going on, that require some major pain relief. Also my insurance won't pay for Lyrica! I am going to have to fight for Lyrica, as I can't take neurontin without getting very crabby and lethargic.

Hydrocodone can be 'called' in versus oxycodone or greater which must be picked up or mailed and delivered in person to the pharmacy. A real pain...almost as much pain as 'the' pain. If you don't pick it up and deliver it, it takes a week to get it.

PN pain management is in the dark ages....often PN pain is assumed to be burning pain instead of the kind of stuffed into your body part pain...or aching pain....Lyrica, for me, doesn't relieve that kind of pain. At first when I got this neuropathy and didn't know what it was I kept telling the doc I had 'anterior compartment syndrome'. Your description sounds exactly like what my legs feel like, too. I also have oscillating on top of that...I don't know if you occillate. That doesn't hurt, but it sure feels icky..kind of 'otherwordly'.

Anyway, by all means, have a talk with your doc. It is always a hard thing to do, but we do have a right to be treated humanely and live life to the fullest, despite the condition. It is a shame to have to deal with the medical system being so cumbersome....I am still waiting for a script I called for on Tuesday...and it is Saturday!
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Old 03-22-2008, 11:19 AM #5
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Default Been There, Too---A Mystery!

Bob, I had a great time with minimum pain in Europe last spring (on LYRICA at the time) but several days after I got home I was in horrific pain that led me to ask my PCP for something. He prescribed oxycodone, which helps a little but constipates. Later on I tried tramadol which helps more but gives me urinary problems unless I take only small doses. It's a losing game sometimes, but I keep searching!! BTW, Bob; keep posting your contributions for searchers to profit from and thanks---Tom
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Old 03-22-2008, 01:06 PM #6
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Lightbulb Well, Bob...

The way I approach my feet and their flares is to do what I can first, before
considering other options.

I use Salonpas (OTC) and Lidoderm (RX) when I get lots of pain (which is not often but it does occur). Last night I had to use two Salonpas on my right foot.

When I walk on the rocks during vacation I can have problems too.

Getting started on opiates, typically does not have a return. Once on them,
people tend to stay on them. Your high dose of Tramadol would have to be
tapered carefully, during the beginning, and that might be tough on you.

I would suggest a couple of days of NSAID to see if this is arthritic pain you
are having. The ball of the foot is suggestive of that to me.

Have you tried soaking in epsom salts? The pain the calf, and cramping suggests you might find the magnesium helpful.

In other words, don't assume this is just more PN...it might be arthritis, or tendonitis and may respond to NSAIDs for a short time. I use Aleve liquigels, which I have found to be very fast acting and stronger than the traditional tablets. I used two this week in fact (storm systems tend to bother me).
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Old 03-22-2008, 07:10 PM #7
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In the very beggining of my troubles one GP put me on inflammatory meds and it did help the swollen feeling in the balls of my feet, but i didn't continue taking it for very long because of the amount celebrex she wanted me to take, it was 6 a day, 2 x 3 times daily.
One thing i noticed with my dosage of Tramadol slow release, [300 mg x 2, every 12 hours ] i found that my system must have became tolerant to it and i use to back it down to 200 mg for about a week then go back up to 300 mg and it worked again every time.
I know now that 200 mg x 2 Tramadol a day is suppose to be the normal limit, but i took 300 mg for a few years until i was able to reduce them, 200 mg x 2 daily just didn't cut it for me, but i was under the supervision of my neuro whilst taking that amount.
I hope it settles down for you soon.

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Old 03-22-2008, 08:29 PM #8
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I wish I could take Tramadol, but it landed me in the ER....I thought I would die right then and there. I never went thru so many bodily dysfunctions at once. That seems to happen to me when ever I take an SSRI.

I don't seem to have issues with opiates, except for stimulation, so I have to choose between sleep or pain relief. To the amazement of my docs, I seem to have no withdrawl issues, other than an exacerbation of RLS briefly. I was at one time on Fentanyl, but didn't like it, and went off it. I was on Oxycontin and had an issue with it not disolving due to gastroparesis and apparently I have some denervation issues with the esophagus, so slow release stuff is inconsistent....so my doc perfers I stay on short acting stuff. Right now I am on liquid opiates. Pills won't go down. That said, I don't use a lot of it, but when I 'flare' up or have an issue, I won't hesitate to ask for it. When I don't need it, I go off of it.

Every one has their own Cytochrome P450 genetic fingerprint. You can actually be typed. You can make a decision on opiates....not every one does poorly on them. Hydrocodone can be called in to the pharmacy, oxycodone is stronger and you have to go pick up the script or have it mailed which is a pain...and you have to do it every month. That alone has made me more partial to hydrocodone. I recently read that Darvon or Darvocette is not much better than aspirin and can cause heart damage, so that went out the window recently, and I 'upgraded.' Because I had bowel issues prior to opiates, and it is due to denervation, the opiates really don't bother it as much as it would for folks without those issues. I won't ask how your bowel issues are.

I have no clinical inflammation, and they have enough pieces of me to know, so, anti-inflammatories won't work, and with my esophagus in the state it is in, they are out of the question, unless I want to bleed.

As far as where drugs or anything is made these days, I would assume at least some ingredients come from China...in everything.

You know your level of pain, and it is your decision. Read all the opinions, and like always, make the best decision for you.
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Old 03-22-2008, 09:42 PM #9
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I AM ALSO GOING THROUGH THIS BOB YOU DID A GREAT JOB DESCRIBING
IT. fOR MY LEGS i HAD TO GO FROM DIABETEC SOCKS TO COMPRESSION
HOSE, i THOUGHT OH NO,BUT THEY WORK BUT NICE TO TAKE OFF AT
NIGHT,IF YOUR A DIABECTC,BUT CHECK WITH YOUR DR ,DOES IT EVER
LOOK LIKE YOU HAVE WATER BLISTERS..
i WOULD LIKE TO GET OFF OF THE NEURONTIN,IT SEEMS TO HELP,WOULD
HAVE TO TALK TO dr. SHE STILL HAS SHATTERED LEG,AND I'M ON 3600
BY IT MAKES ME CRABBY.I HAVE HAD NO TROUBLE ON OPIOIDS BUT
VERY ALLERGIC TO THE 2 MEDS YOU TAKE..SURE CAN TAKE THE FUN
OUT GOING OUT,YOU SOUND LIKE YOU HAVE A NICE WIFE. i DON;;T
REMEMBER DO YOU HAVE A CANE OR SITDOWN WALKER.
I HAVE PUT LIDODERM PATCES ON BALLS OF FEET AND ON CALVES,IS THERE
ANYWAY YOU COULD PUT YOUR LEGS UP AT WORK FOR SHORT PEROIDS
OF TIME. FENTANYL PATCHES MADE ME FEEL WARM..GOOD LUCK
BOY THOSE CALVE SPASMS HURT I GET THEM IN ARMS AND HANDS.
ARE YOUR GRANDKIDS COMING FOR EASTER? bLESS WISHES TO ALL SUE
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Old 03-22-2008, 11:00 PM #10
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Oh, one other option that I don't know if it will work or not for you, but, I started on a small dose of Baclofen for plantar flexion spasm. I am on a tiny dose and it has to be titrated up, and I don't know enough about your other meds or issues, but, Baclofen is used a lot for hereditary PN and cramps and spasms.....worth asking about maybe?? If I remember correctly you fall in the idiopathic category, and almost half of those are hereditary cases. I am not sure how many others have experience with it and if it helped any one else. It isn't a pain drug, it is an anti-cramp, anti-spasm drug.

It is not a break thru drug.

Baclofen has 'issues' too, but dependence is not one of them, however, you can't just quit it either, it has to be weaned off. Baclofen will kick up the level of any other 'depressant' medication such as benzo's or opiates. Baclofen is also a drug that rapidly loses its efficacy, so the dose does end up being raised eventually.

It does work for cramping type pain, so it may be worth a try. You do have to take it all the time, not just when you have cramps or spasms.

Every med has its downside, for sure. I don't think any one in their right mind, opts to be on any of them if there is a better solution, sometimes there just isn't one.

I never used Tylenol or aspirin for even a fever, as fever serves a purpose. For me, the hardest drug to take was steroids, and I think for me, they did the most damage....at the time, it was thought to be the best option...what can I say? They are lifesavers for many people, side effects or not, there isn't a choice for some folks.

Sue--Neurontin made me horribly crabby, but Lyrica just made me forgetful...hubby preferred forgetful, so did I, but insurance will pay for crabby but not forgetful...so I am on neither. It is amazing how much difference there is between two such similar drugs. I am glad to hear some one else got crabby on neurontin, as I thought it was in my head....oh my, it was, I guess.
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