I've never set up a poll, but I'm going to try. If I can't do it, perhaps someone with better computer skills could.

1. How much weight have you gained since developing neuropathy?
2. How much exercise are you getting?
3. Have you developed high blood pressure? diabetes?
4. What medications do you take?

Okay, I'm begging off on this; can someone else give it a try?

Okay here it goes::

I have gained 37 pounds since starting Lyrical last October.
My blood pressure is normal.
I exercise 5 times a week. I take aerobic classes, yoga and do some weight training. I used to be a runner. Can run no more. But I feel fortunate that I can do the above.
My meds are Neurontin, Cymbalta and Lyrica. I had no weight problems soley on Neurontin and Cymbalta. Once I started Lyrica I packed on the pounds. Fortunately I was too thin to begin with, and now I am chubby - oh-well. I feel better than before. So I don't regret the Lyrica.

Laurie

1-Weight gain - Maintained overall....Once diagnosed was first on Neurontin...gained a 'pound or two' but was NOT acitve at all. Changed to Keppra, lost about 8 lbs at first, but, the 'inactivity' thing, got to me, loss of muscle tone, etc. Got PT. Lost about 1-3 lbs. but, gained it back after. Even after 2 major inactive periods due to foot & leg injury, no appreciable weight gain, other than my GP's office ALWAYS registers 15 lbs +/- every visit. Since I receive IVIG...which is weight - rate allocated. Well, aside from the fact I've INSTANTLY gained pounds, I'm getting needed 'juice'? Before/after IVIG diffs = 3-5 lbs +. Gone after 2-3 days.
2- Exercise - I would at least try to go OUT every day,not needing to use 'carts'....I know the walking is essential to 'Keeping whatever mobility I have' and continung to be able to be mobile! Finding 'safe' walking spaces is tricky tho? Further, the hen the brick wall hits you' factor has to be considered. As in, IF you go to far...CAN you get back to transport home?
I admit, I don't do my home 'programme' as often as I should, but, I DO DO it! Unless, w/fracture issues, I'm able to walk, limited distances, and drive and get around. When this becomes an issue, well, It will be a real problem? I'm lucky, I KNOW!
3- BP/Diabetes - no, and no.. Duh?
4-Keppra, synthroid, Zyrtek, Arimidex. Fosamax and lots of vites and ointments as needede.

Concise enuf? For more, just ask?! - j

The first year no extra meds - no weight gain - was still able to "run" around (but kept losing baance and falling) to get to grocery store but had to stop working and move into a place with no stairs. Was able to still eat normally...

Second year - autonomic nueroapthy hit and PN got much worse too - actually gained 10 lbs iving on Ensure (could no longer digest regular food) but had to add multiple meds to control constant nausea - activity level down as well as all overall PN progressed signiificantly - exercise was wheelchair runs and housework as tolerated.

Third to forth year - about same as above - tried PT - etc. but no improvement - still lots of nausea meds, sleeping med, and tons of tylenol for suddently developing lumbar pain. Still able to function ok around house and in wheelchair when out.

Fifth to current (7th year) - Two years ago - lost 30 lbs in 2 months (thank goodness had gained that extra 10 to start with) - taken two years to gain back about 12 lbs - still need to gain. Lots of Nausea meds and still on liquid diet. Have been on IVIG for a year - has helped numbness, tingling in extremities but not autnomic symtoms at all.... Developing cardio-myopathy (due to autonomic PN or Amyloid? - currently being tested to see) Lumbar pain severe - take tylenol flr it -have tried PT, soft back brace, lyrica - without success.....

Taking right now sleeping meds, heart beta blocker, tylenol for pain (cant take opiates), lots of nausea meds, and IVIG. Activity level at this point very low due to nausea, back pain, and SOB/weakness - will be seeing lots of docs in the next few months.....

My blood pressue has gotten lower (docs attribute to cardiac complications) - and cholesterol in very high range.... No diabetes.

Thats my story and I'm stickin' to it....

I have gained 13 kilos (30 pounds) since my PN started March 2005.
I actually gained the weight between June 2005-June2006. Those were the days I was the most medicated.

I was put on Dothep 150 mg nightly. The Dothep caused palpitations,so the neuro asked me to take 50 mg Betaloc with the Dothep to counter act the palpitations. Somewhere around the same time I started having the anxiety/panic symptoms and I noticed my BP was quite elevated during the episodes. Well this then sort of evolved into a daily hypertension problem with intermitent hypertension spikes.

I am no longer on Dothep but I take 50 mg Betaloc x 2 daily
and also 4mg of Atecand (Arb)
Also I take 20 mg of Nexium for Gerd

If I am experiencing alot of pain I take paracetomal with codeine (OTC).

I get at least 3 if not 4 days of exercise a week. I power walk for 30 minutes,and I also may go swimming once or twice a week more. I want my own treadmill, but it costs too much money. I really need to add more exercise.

Thank you-

1. Just a little. Mainly, muscle turned softer until I started yoga.
2. About 1/2 - 3/4 hour a day walking, plus my work is physical.
3. I've had mild high blood pressure for years, even before PN. My fasting blood sugar is in the high normal range. It's crept up, but is probably due to being 14 years older than when the PN started.
4. Nothing for PN, otherwise Lisinopril for high blood pressure, 2 grams crystalline niacin to control blood lipid ratio, Aciphex for GERD.

1- weight gain -- lost over 3 stone in weight

2- exercise ----- just mainly walking up and down a lane of the local pool [ cardio exercise]

3- blood pressure & Diabetes - reversed prediabetic state, blood pressure was slightly elavated when heavier, but always very good these days.

4- Medications -- 200mg x 2 a day Trammadol SR, Endep 100 mg at night, "Tramadol is only used for other med problems these days ".

Thats about it.

80 pound weight gain
little exercise
Blood pressure issues

Prednisone
Zantac
Klonopin
Injectible and oral B-12
Minocycline
Nystatin oral
Occasional Ativan
Occasional Bentyl

Asthma drugs when Prednisone is down include:

Xopenex in nebulizer
Pulmicort Respules in nebulizer (Yuk, more cortisone)
Sometimes Albuterol

I think that is all. Oops. I forgot the Darvocet N-100...
Cathie

Alan has had Idiopathic PN for around 18 years.

1. How much weight have you gained since developing neuropathy?
50 to 70 lbs

2. How much exercise are you getting?
Now he goes to the gym at least 3 to 4 times a week, Lost over 65 lbs. Does a lot of weight training and does the eliptical machine thing. Can't do treadmill because of ulcers underneath his feet but they have since healed.

3. Have you developed high blood pressure? diabetes?
Never had high blood pressure in his life, Or diabetes.

4. What medications do you take?
He had been on the fentanyl pain patch and vicodin for breakthrough pain. Had to detox from that. Was on neurontin. Got deathly ill, was on elavil, got horrible itching, Used Lidoderm patches, cutting them and putting them on each toes. Has taken Lyrica for 6 weeks, had fluid retention and as of yesterday, is now off lyrica. He is still on plavix and aspirin.

Because he has never been on any blood pressure meds, when he got the stent, they put him on altace and metoprolol. He is now off the altace and they halved the metorolol to 25 once a day.


Hope you feel better Liza Jane.
I know, no fuzzies.

Love, Melody

I'm not sure what, exactly, to make of the results--there are some wide differences. Some of us have become sedentary and put on loads of weight. Others have become sick and lost weight, and others still have worked at regaining health and done well by weight.


As for me, my weight was stable and I exercised regularly with yoga and weights until the laminectomy in feb 06. Since then I've been sedentary and have gained 10 pounds.

Again, the obvious: the biggest danger we all face is becoming sedentary and gaining weight. Neuropathy won't kill us, but hypertension, diabetes, and coronary disease can.