And Where Do YOU Draw The Line on Meds?
 

I've been very remiss in not visiting and apologize to all of the members. I've had too much going on in my life and I shall not bore you with the details.

My physiatrist would now like to add Lyrica to the mixture of Tegretol, Tramadol, Neurontin, Baclofen, and Hydrocodone. Oh! And yes we must watch for weight gain and possible liver disorders including platelet problems.

I already am up to 290lbs. as of this last Thursday. Shocking both me and my PCP. My feeling is I would rather "live" with pain rather than be in a stupor or die of all the causes from weight gain, but be in less pain. What do you think?

This is where I am drawing the line on the benefits of medication vs. the side effects and potential additional problems involved with these meds. Oh! In addition, he wants me to see another specialist who does brain electrode implants that may help in reducing my involuntary movements. Much like Michael J. Fox has had done for his Parkinson's disease, a surprise to me. This does not excite me either.

As it is, the decision has been made to move my wife's life dream of going to Hawaii, scheduled for next April, up to this November as the doctor has no way of knowing how far I could progress in that period of time.

So, thoughts, comments, experiences, what do you say to my logic? I still wish to live life on "my" terms and not be dictated by medications.

I gained 30 lbs on Neurontin (6'1" 215-220 up to 250), took it off with Weight Watchers, switched to Lyrica, put it back on.....and haven't lost it yet.
Still at around 250 +/-.
But not really trying. I figure the trade off is worth it. The unmedicated pain levels were 6-9 - and now with medication are 1-3 with flares to 4-6.
Its worth the 30 lb trade-off, I think.
But I've just stopped smoking (31 days) on Chantix and do not know what will happen with my weight- going thru the withdrawal and substitution process.
I'll find out when I see my doc in 3 more weeks. I haven't weighed myself yet.
Too chicken, I guess.

Hi,

I've drawn the line like this (pretty sure I'm older than you - 75 next year):

No more neurontin, Lyrica because I cannot function on them. Granted that with some people it's worth it to trade off and be in less or no pain.

But from where I sit, what difference does it make if "only a small percentage" get the less common/more dangerous ones if one winds up in that "small percentage?"

And no more statins, because I will probably never know for sure if Zocor caused my small fiber neuropathy, but I strongly suspect it could have.

As you said, you would rather live life on your terms and not be in a stupor or put up with large weight gain.

I would rather live life on mine at my age to the extent possible.

Good luck with your decision, whatever it may be.

Sheltiemom

Correction: "if one gets the less common/more dangerous SIDE EFFECTS .....

Sheltiemom

*** What do you mean by this? I have noticed some cognitive things going on with me which are disturbing. Memory mainly. I'm thinking it might be the medical marijuana, although my consumption of it is pretty low and my dose of Lyrica is the highest allowed (4 x 150 mg).

CB

I am on a combo of hydrocodone (no more than 6, 5mg per day and as few as possible.) AND neurontin and I can't take more than 900mg per day right now or I am a zombie.

I was on fentanyl with oxycodone, baclofen, klonopin and NONE of it worked. Pain just seems to rise to the level of the pain meds.

The answer to the next question....yes, I hurt.:( But my head is fairly clear...so at least I know where the pain is coming from.

Im sure that individuals experience side affects differently

Currently taking

4800 mg/day neurontin
150 mg/day Lyrica
90 mg/day cymbalta
50 mg/day desipramene

Neurontin made me drowsy at first, but doesnt seem to any more, I only find I have bad emotional lows if Pharmacy is slow to refill meds for last 3 on my list. Then I crash emotionally. Once I was ready to drive my car into a telephone pole because of Anxiety/Depression. Instead, I calmed down and only came home and tried to OD on insulin. Yikes. Spent a few sessions with psychologist talking about how to avoid that situation again.

Meds are the only thing that allow me to get out of the house and keep from giving up at this point. I really catastrophize when I dont get my meds and the pain overwhelms me. Even with the meds, watching what I do, so I dont over do it, and being concientious to take "Me" time to recoup once in a while is important.

I know what med side affects feel like though. When gastroparesis put me in the hospital a couple years ago they had me on so many anti nausea meds that the side affects made me feel awful. I wouldnt attempt to go off any meds abrubtly... my 2 cents.

I've been on Mevacor, Pravachol, Zocor, Lipitor, & now Crestor in that sequence. That started in 1989 when my cholesterol, with a fairly good diet, was 437. Mine is genetic, although I still have to watch my diet. My father was a strict vegetarian and on meds and couldn't get his below 300. My NP started just over 2 years ago at age 45. The skin biopsy indicated that it is not SFN but I would assume that if statins can cause SFN it would do the same with large fiber nerves. Well that was one of the side effects that I never heard about.

when?
 

I ask myself everyday do I want to go on taking the pills or just jump off the train. i haven't been able to decide yet.Even with the pills i'm in excrutiating pain and can barely walk. I'm 37 and have PN for 8 years. I've been through it all (testing/meds). Nothing helps me anymore. I just don't know if its worth it or not. I know that i'll never live to be old, it's just not in the cards. I hope to live to be 50 ( that's my goal).Everyone has to make their own choses about the meds and wether or not they are worth it.