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Posted 8/2/2009 3:47 AM (GMT 0)
Hi everyone.

I saw this forum when I was looking up some medical information and information on a drug I take.

I too suffer from chronic pain from a nerve disease I have called Spinal Muscular Atrophy. This disease is hard to explain, but in short it's more of a DNA problem. I protein is missing from my DNA, I think it's the SMN2 protein, and with out it, my muscles can't grow because the lining around the nerve's that give the signal for muscle growth aren't there. It also messed with the nerve's in my spine to where I can't walk.

So, since I'm in a wheelchair all day, my pain is caused from gravity pulling on my joints and muscles, and since my muscles can't support my weight, it causes me a lot of pain. It makes it a pain to sleep too, since I can't roll over on my own during the night, if I stay on one side or my back to long my bones hurt terribly after a couple of hours.

My doc prescribed me with different pain meds, from Hydrocodone, Oxycodone, to Morphine. And the only drug that seems to do the job is Oxycodone.

I'm having withdrawal symptoms, because I ran out three weeks ago and I have too go two more weeks without it. I have a few of the symptoms like:
  • agitation, fever, dilated pupils, tremors, hot and cold flashes, loss of appetite, and diarrhea.


Now, it's not really diarrhea, but very loose stools, and I'm going frequently.


Now here are my questions.

What's the best way to combat these withdrawal symptoms?
Are their any other pain meds that might do the job to kill the pain?


I do have other conditions that prevent me from taking drugs with Tylenol in it like Hydrocodone, which is a liver condition. My liver enzymes have been elevated for a long time, and have caused damage to my liver, and Tylenol based drugs make it worse.

My other conditions are:

Toxoplasmosis
Type2 diabetes
kidney stones


I hope maybe you guys can give some insightful info that I can discuss with my doctor, cause I'd like to get off Oxycodone, and she would like me to get off of it too.

Thanks,
McGreggor

EDIT: Ah I forgot to mention. I only take Oxycodone twice a day. My prescription was for one teaspoon (I don't know the strength of the medication and I have to take it in liquid), and I take 1.5 teapsoon's.

Post Edited (McGreggor) : 8/1/2009 9:50:41 PM (GMT-6)

Posted 8/2/2009 3:55 AM (GMT 0)
hello, and welcome.

I cant give you much advise, as all withdrawal symtoms should be talked about with your doctor, but I'm sure other's will be along to give you some answers.

-carmen
Posted 8/2/2009 4:00 AM (GMT 0)
Also, I dont now if I missed it or not, but why are you out of your meds? If your taking them too soon you should talk to your doctor about it, ALWAYS, especailly before taking extra as that can get you a boot out the door.

-carmen
Posted 8/2/2009 4:11 AM (GMT 0)
I ran out since I take that extra .5 teaspoon, which my doctor is aware of. She, for some odd reason, never rewrote or modified the prescription so that the amount I get filled (which is 900ML) at the drugstore will actually last, and this is the first time that the drug store said that it's "too soon" and made me wait.
Posted 8/2/2009 7:45 AM (GMT 0)

Hello and welcome to Healing Well. I am so sorry to hear of your situation that you are dealing with now. Thats the last thing you need on top of your other health issues. My first thought is why haven't you contacted your dr and told her what is going on. I feel certain there are other meds she could rx that would help you thru this. It  sounds like you ran out of meds way too fast and usually when this happens the drs take a real dim view of that. In many instances they will cut you off and tell you to find healthcare somewhere else and legally they can do this.

We all understand  too well the idea of taking narcotic pain medication. But, for many of us this is the only way we can function and have some sort of quality life.  

My only other thought here would perhaps ask your dr to ref you to a pain mgt specialst and see if they can come-up with a better game plan. Once you are under the care of a pain mgt specialist they have a set of strict guidelines and if you stub your toe somewhere along the way, they too will tell you to find another dr.

I do hope you will keep posting and let us know how you are coming along.

Posted 8/2/2009 4:23 PM (GMT 0)
Actually, my DR did referee me to a pain mgt specialist and they refused to see me cause their words were "We can't help you."

They took one look at my file, saw my disease and problems and said no.

The reason I haven't contacted my DR is I didn't know I was having withdrawal symptoms until I looked up what they were last night. I am going to call Monday morning and see what she can do.
Posted 8/2/2009 4:50 PM (GMT 0)
McGreggor,

I'd say calling your doctor tomorrow morning is the best thing to do...

You said that you've been out of your meds for three weeks - did you just start getting these symptoms? Have you been having them for three weeks? Just not sure why you didn't call the doc three weeks ago, saying that you needed an updated prescription?

Re: the Pain Management specialist - did they give you a reason for not wanting to help you?? Did you let your primary doc know what happened?

Regardless, I hope you feel better. Let us know how you are doing.
--Tina
Posted 8/2/2009 5:03 PM (GMT 0)
 

 

   Dear McGreggor,

 

     Good afternoon! My name is Dani. It is a pleasure to meet you. I am glad you have decided to join Healing Well. This is a wonderful resource for knowladge and support. I am sure someone will stop by with more ideas....

 

     I did want to stop an say.... I think you should attempt to see another pain management specialist. My first one took one look at my records and decided I didnt need help either. (funny, turns out he has records from some X Ray taken back when my second daughter was born, real eye opener as to the rate of damage for me) I too have spine "issues" thou mine are "bone" related.  There are pain management specialist with an extra training on spine diseases and conditions. Long term pain is better handled with a specialist as new techniques and procedures are being implemented daily. ALso there are many aspects of long term pain that go beyond just the "pain" or part you feel.

 

     I am worried that your primary care physican has left you in a position where you are not recieving any pain relief and are going through withdrawls. That .. isnt okay. You shoud not be left to literally suffer. Untreated long term pain can cause MANY problems.. first off your adrenal glands will miss fire. Your chemical composition in your brain will change. Insomnia and fatigue will increase and with less rest you will barly be able to consume the amount of food & nutrition your body will at that point NEED to survive. Why? Because you body is in 5th gear begging for gas, my friend. Your body and your pain and you comfort are very important. Do not give up because your doctor has left you or some PM clinic doctor said "no." You too, deserve a chance to live and thrive. And you know? Most PM will tell you and help you with withdrawl so the effects arnt damaging to your body. And usually they have good reason for withdrawling.. sometimes a want to try differant medicine. SOmetimes it is a strong anti depressant that needs to be stepped down gradually... WHo know?!?! But atleast it is planned and safe, and not damaging.

 

     I do not mean to be quite so forward. Please, believe me when I say that normally I am not so firm about another persons life. But in your case,  You do deserve to live as comfortably as possible.

 

     It really is very very nice to meet you. I do hope you decided to stay so we can get to know you better  :-)

 

*warm huggs*

     dani

Posted 8/2/2009 9:26 PM (GMT 0)

Momto6boys said...
McGreggor,

I'd say calling your doctor tomorrow morning is the best thing to do...

You said that you've been out of your meds for three weeks - did you just start getting these symptoms? Have you been having them for three weeks? Just not sure why you didn't call the doc three weeks ago, saying that you needed an updated prescription?

Re: the Pain Management specialist - did they give you a reason for not wanting to help you?? Did you let your primary doc know what happened?

Regardless, I hope you feel better. Let us know how you are doing.
--Tina

I didn't start with the symptoms until the middle of last week. Not this past week, but the week before. That's when I started having these symptoms. For some odd reason, it just did not click in my head that I might be having withdrawal symptoms until my mom asked me that last night.

As for the pain management group, and it has been a while since I talked to them, but from what I remember they said that due to the nature of my disease and the problems it causes, they didn't feel that they could help me anymore than my DR was already. Even my DR was outraged that they refused to see me.

Also, the reason I didn't call about changing my prescription, is this is the first time she gave me a 900ML supply. She originally had just been giving me your standard 30 day supply, but then she realized that this was costing me a lot of money to the drug store (even with insurance), so that's why she gave me the bigger supply. I would still run out, but only have to wait a few days for a refill.

@Dani: Thanks for the warm welcome. I'm not sure how many pain management groups or docs are in my area, but I will talk to my doc about it again and see if she can't find someone else.

And about her leaving me high and dry like this, this is a first where both the insurance company and the pharmacy both said it was too soon. While I am surprised that she didn't modify my prescription, I will talk to her about it. This is a first on the withdrawals for me. Like I said above, when I ran out before, it was for a couple of days, so I never had problems. Guess I should have made that more clear in my first post. Guess I wasn't thinking.

But I can say that I don't want to experience this again. Guess I need to be a bit more, stern, when I call.
Posted 8/2/2009 9:42 PM (GMT 0)
welcome to HW, i am sorry that you are going through what you are dealing with. i know how badly my muscle spasms can hurt- i can't imagine what you go through. i am stunned that there isn't a specialist that can pick you up as a client. i'm glad you have an understanding pcp who is willing to prescribe you that kind of medication, most pcps won't prescribe those kind of meds anymore. mine only did once in an emergency situation for me. i don't know much about the oral ratio of oxy, though i take the pill form. have you told your pcp whats happening? i think they can override the insurance company when stuff like that happens. i had a problem with my sleeping pills a few months back... they kept saying no refills for like 3 months (and i get my refill monthly, not every 3 months) so they had to contact my pain specialist with some special form to get the override i needed. there should be something they can do. maybe even consider asking for pill form oxy while you are waiting on this to clear up. at least its something. i know withdrawls can be painful. and something is better than nothing at all in my opinion. let us know what happens! good luck and hang in there!
Posted 8/2/2009 9:52 PM (GMT 0)
I had an awful time with withdrawal after I'd been in hospital #2. I had a lot of those symptoms as well as couldn't stop moving my arms/legs when I was supposed to rest. My surgeon prescribed xanax for a short while. It helped with a lot of the symptoms and helped me to sleep when I needed rest (I'd been awake for two and half days afterward, moving so much it was hurting the new surgical scars).

Glad you joined the community. Hope that helps.
Posted 8/3/2009 4:30 AM (GMT 0)
Thanks for all the responses. A lot of them made me think of things that I need to go over with my DR, so kudos to ya'll for that.

My personal thoughts on what a specialist hasn't picked me up, is Spinal Muscular Atrophy is very rare. It's one of those things that when you tell someone about it, they look at ya funny.

I do see doctors who are "Specialists" with SMA, and sadly they are a joke. Last time I saw them all they did was check my range of motion, ask if I need any medical equipment prescriptions, and was out the door. When I mentioned my pain and how bad I hurt, they just said were sorry and walked off. Ugh.

Here's hoping tomorrow is a good day, and that my doc can help me with my withdrawal problems.

Cheers all!
Posted 8/3/2009 9:31 AM (GMT 0)
McGreggor, my heart goes out to you. I sincerely, hope your PCP is able to help you out here. Please let us know how things go.
Posted 8/3/2009 10:16 AM (GMT 0)
McGreggor...

I have a condition they can deo nothing for. It will only progress and be more diliberating. Try another PM clinic. The one you had could of been one of those who only do procedures. My PM clinc knows my meds with change with time as the progession of the decease continues.

Just my two cents before I have to go to work.

I wish you best wishes and please do go to the doctor..

Laurie
Posted 8/3/2009 2:27 PM (GMT 0)
i would defitinitly look into another dr, there has to be some kind of medication that they can give you to at least relieve some of the pain. i know none of us are pain free, but you should have something! i have a pain pump- could that not work for you if it was filled with baclofen?
Posted 8/3/2009 4:01 PM (GMT 0)
McGreggor,
I know how bad the WD symptoms can be...and I agree, you don't want to do this again... From now on try not to take extra unless it is needed...that way you won't run out. I would ask the Dr. about taking something else for BT pain, that way you have something else that you can take and won't have to take the other meds...I take Methadone for the long term pain and Oxycodone 30 mg. for the breakthrough pain...that way I have options...

I hope you make it through ok...we are here when you need us...

me.
Posted 8/4/2009 12:45 AM (GMT 0)
Well, I got my prescription refilled, and wow. The nurse that works for my DR is so.....UGH! It took three phone calls for the nurse to understand that I was out, and having withdrawal symptoms. Then, we had to argue that they needed to call the pharmacy to override the insurance company. UGH!!!!
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