Can we talk pain meds?

[lovemy6monkeys]

I have a very hard time taking any medicine stronger than Tylenol. Except for my copaxone...oddly, I think my brain considers that on par with my daily B12 and mulivitamin LOL

Anyway, I'm wondering how you guys handle pain and pain meds?

I broke down and talked to my neuro to get the ok to use gabapentin (which I use only before bed) during the day on an as needed basis. He said it might make me sleepy, but should not have any other effects. And he said I do not have to keep a steady stream in my system, which was a big worry.

Now that I have an ability to control sore muscles/pain during the day, that took away my second biggest reason I haven't exercised in almost a year. (Reason #1 is I'm lazy LOL). So, yesterday morning I got off my tushie and did 10 minutes on our elliptical machine. By the afternoon I was sore, and by evening I was very sore. Today I was sore again, and by afternoon my knee and thigh were tightening up, so I went ahead and took 200 mg of gabapentin.

I have never allowed myself to take pain meds to take all the pain away. I take enough to make it more tolerable to do my daily routine.

My goal for working out is going to be another 10 minute elliptical tomorrow. Then I will do 10 minutes on Mon/Wed/Fri and a pilates workout on Tue/Thur/Sat. After next week I will increase my elliptical workouts by 2 minutes each week (or maybe 2 weeks) until I get to 30 minutes.

I know this will cause soreness and muscle issues. I'm not sure if my policy of "just barely enough meds to be tolerable" is a smart way to deal with pain issues.
~Jess

[RedFlame]

Thank you so much twist.  

I like the term 'consultant', it sounds like both patient and consultant are a team.  Wow, that could get confusing with the Mister, when I was a kid we referred to our regular doctor as a GP.  

I have learned some from watching television.  
crisps-potato chips
chips-fries
pasties-noodles
mum-mom
sweets-candy
porridge-oatmeal

interesting huh?

Anyway, I hope your consultants start making firm diagnoses for you---it's good that you have pain management though!


Hugs
Red

[twist330]

Hi
Thanks for your help.

A Consultant is a doctor who is a specailist in a certain area.

So a neurologist is a consultant. I see him next month.

The Dr I see whom is treating the pain is another consultant who seems to pick up the weird and wonderful, thats me! no Dx and don't no what to do with. He has suggested I have reflex sympathetic dystrophy, but the neuro say No! it neurological, Hmmmm but he doesn't no what.

Incidentally if a consultant is a surgeon then he is refered to as Mister, not a doctor at all and this can get confusing as they take offence if referred to as Dr.

A GP (general practitioner) is the same as your PCP.

They all work for the NHS!

Got it? I'll test you Later Lol

Twist

[RedFlame]

Since he said they are "working on one thing at a time", he may mean that they will deal with each pain component to get the right doses of each drug you will need.  It sounds like a smart thing to do. That way they can track the level of spasticity, neuropathic pain etc.  It doesn't help when you are in pain though.  

Can you place a call to your consultant and express your concern with the level of pain you are in.  Maybe he/she doesn't know how bad it is.  

I am not an expert in this for sure---so let us know what happens.  

I hear those of you from the U.K. talk about 'consultants'.  Is that a doctor?

Hugs,   Red

[twist330]

I am on 400mg of prebabalin (Lyrica) a day, split between a morning and evening dose.

A my last appointment the consultant added amitriptyline at night which I have been told to tilter up to 50mg. ( I had started on 10mg about 3 weeks ago) I am currently on 25mg.

But I still do not feel the nerve pain is under control.  I also get a lot of cramp and muscle spasms but when I last saw the consultant he felt that they can only sort one thing at a time. To understand what each drug is doing.

I feel my body just adapts it self to the drug, although when I tiltered down gabapentin to change to lyrica I was in a great deal of pain.

It would appear I am on the highest dose of Lyrica they prescribe for neuro pain and when I hit the 50mg of Amitriptyline the same would apply. There seems to be NHS guidelines that have to be followed. They can be looked up on line, what it doesn't say is what happens next.

I have also had Botoxalin injections around my eye (this is meant to kill the nerve endings that are miss firing) which has made it look slightly better but I still have the pain!

I am getting vey concerned I dont no what happens next?

[Sparkysarah]

I have been thinking a lot about pain meds recently and have been trying to reduce what i am on. I realised that my tingling/buzzing is better than it used to be so I thought I would see what happens if I reduce my gabapentin. i was on 1200mg a day and am now down to 800mg a day and aim to try and get to 600mg a day.

I am also on 10mg a day of amitryptiline at night and have cut this to a weeny 5mg (have to use a pair of scissors to cut the tablet as they are so small and no line down the middle to break them). I  hope to come off this soon as I was put on it to help me sleep and for nerve pain and both these are better now. I am realistic that if my sleep deteriorates then I may need to rethink this as I know I really need my sleep.

I do not want to be on any more meds than I need as I expect there will come a time when I need more in the future. I also want to see how I am (ie how much tingling/buzzing do I now get). I know that reducing gabapentin has to be done very slowly and I have not had a problem doing this. If I can stop the lunch time dose by Christmas I shall be very pleased.

So that's all from me. Off to the gym now (which I hate) and then a swim. With muscles I have been advised "use it or lose it" so am sure that for overall wellbeing, exercise is doing me some good. I at least feel it earns me the latte that I have afterwards that puts back all the calories that I have just lost!  Lo..life is for living and enjoying!

Love Sarah x

[doublevision1]

Twopack makes a good point about the liver.  Anyone on regular meds which are filtered through the liver, ie: interferons, acetaminphein, should have their liver enzyme (eg ALT, AST, ALP) levels checked regularly.  

Re: exercise, there are many things you can do to minimize muscle soreness.  Pre and post workout stretching is really important to avoid injury.  A warm bath afterwards can help sooth aching muscles.  Wearing compression garment (eg snug tights) while exercising seems to help a bit in reducing soreness.  What I find works best is a deep tissue massage.  Hurts like h*ll sometimes, but afterwards I feel so much better.

[lovemy6monkeys]

Have I said lately how much I love this group? Do you mind if I say it again? You are all so wonderful! I have so many questions, and you patiently answer each one. Thank you for that. From the bottom of my heart, thank you.
~Jess

[RedFlame]

I wish I wasn't having to take as many pills as I do.   I have to get the level down enough or I can't ambulate at all.  Sometimes I sit in 'wonder' about the depth and breadth of pain that can be contained in one body.  Sometimes I sit myself forward and just wonder how much I can take.

At times it's just not liveable.

The first thing I am going to ask this neuro/pain guy for is a Baclofen pump.

[twopack]

Don't know who stupid is, I just know that lots of things about medications slip past the docs and pharmacists even with all the safety checks in place.  Lots of people don't know what apap stands for and end up with higher doses than they planned on by mixing their meds.  I'm glad to hear your daily dose is a max of four.  It's safer and it's good news that the smaller dose works to control your pain some (I know it doesn't take it all better).

I thought it better to check than just let it slide.

Mary

[Sumanadevii]

lol...No, I take FOUR tablets a day.  Period.  Even stupid would know better....lol

[twopack]

Sumana, are you really taking four oxycodone/apap tablets four times a day?  Sixteen tablets in 24 hours?  If so, you are taking 5200mg of acetiminophen a day.  The maximum safe daily dose (for the normal liver) is 4000mg a day.  There are single ingredient preparations of oxycodone that could be used to give you the same relief with less toxicity.  You might want to check with your prescribing doc.

Mary

[twopack]

Jess, I think that chronic pain usually has reduction to a tolerable level as it's goal.  It sure would be nice to be pain-free BUT........  always the but.....  Sometimes though, when we least expect it, something happens and the pain will find some moments of respite.

Work with your doctor to find the right levels of pain control.  It sure sounds like the two of you have a wonderful raport and that he is knowledgeable about pain issues.  It's impossible to predict the future path pain levels will take.  You can only deal with today while keeping in mind the potential needs of the future.

I hope you find that the increased activity helps more than hurts in the near future.  You may have to scale back on the speed with which you progress your levels of intensity and/or endurance.  May even have to back off a little at times or slit into two half session a day.  Small goals are great.  Only no goals lead to no improvement.

You go girl.  You'll find what's right for you.
Mary

[figuerpa]

I think taking just enough to make it tolerable is a good idea. The main reason being is that there is the constant reminder that it is there so that you don't over due it due to the meds making you feel like it is gone.

Not feeling the pain is one way to hurt yourself worse cause you will forget about the pain and not be as cautious as you would with the pain. Now I do think that taking enough is imprortant as well. Feeling too much pain can be just annoying and frustrating and hurt like a demon.

I am with you on the littlest doses as possible. I am on lyrica and my neuro told me to increase it if needed. It keeps the pain to a minimum and the burning to a tolerable level. I have thought about taking more but then I think about the fact that if I forget the pain I may hurt myself, and also taking too many pills can not be good for our bodies. I also take muscle relaxers for the spasms that I have to keep under control cause they are a killer and not anything I want to mess with.

And everyone's pain is different to each individual, some handle pain better than others. I have learned to live with the pain in my leg it is when it moves around that it bothers me cause I am so use to it in my leg that I just deal with it, when it moves to other parts of my body that aren't use to it then I have a harder time with it.

I wish you luck with your exercise program you are planning out for yourself.

Paula

[supermum_ms]

Hi Jess,

I dont know what the right thing to do is, i've always had the view that I wont take any pain meds until i'm at the point where i cant handle it any more, usually that 'point' includes tears. It maybe just me, but i find the pain is worse when the meds start to wear off and i end up in a vicious cycle. I dont like taking them because they make me feel space cadet-ish, I dont like the feeling of being disconnected to not only my self but to everything around me, though the pain does that anyway.

I think tollerance for me is more to do with where the pain is, i've a high tollerance but the eye pain seems to get into my headspace quicker than anything else. Funny but i just gave in and took one before reading your post, my right eye has been giving me a good kicking for a while. Though thats not what pushed me over the edge, it was not being able to straighten my left leg after a muscle spam/cramp, I think its called a charly horse, together was just a tad too much on top of menstral cramps lol what next.

DH thinks i'm mental for waiting until i'm bad before I give in, I get where he's coming from but something i can't really explain seems to stop me. I dont know how stupid this will sound but I have a mantra that runs through my head, "YOU CAN DO THIS!" I'm not stupid and if the day comes when i cant do it anymore, i will not hesitate but my pain is not endless and I hope it never becomes so!

Cheers..........JJ

[RedFlame]

I take 300mg of Gaba...3 times per day
Flexeril 10mg, 3-4 times per day
Tramadol 50mg 4 times a day
Vicodin as needed
Klonipin as needed

I also take 1000 mg of Ibuprofen when needed and Extra Strength tylenol as needed.

My pain is not managed at all.  I have been referred to a neuropathic pain specialist and am waiting for my appointment.  I am on low doses of all of these medications.  I know there isn't anything that takes it away, but I want something that has more of a punch.  Hopefully, the pain place will be able to develop a better system.  

[Sumanadevii]

Jess, you have never allowed yourself enough meds to take all the pain away because they doesn't exist for chronic pain.  I can't take most pain meds.  I do take 5mg-325 Oxydodone/apap.  I started with one half tablet three times a day.  I am now at four full tablets four times a day as needed.  Some of us just can't take the stuff in higher doses.  What I am taking takes the edge off my pain.