Does everyone go through withdrawals?

[Nikilee]

It is nikilee here, and I will try to be brief.  I also posted in the addiction forum.  Can anyone here help me know what to expect in terms of withdrawal symptoms, as I weaned off of dilaudid a week ago (had only been on a small amount, max. 2mg. 3x a day, but was at .5mg 3x a day for a couple of weeks, then weaned off of that) and I have just gone from a 75mcg. fentanyl patch to a 50.  This is following an accident from 10 weeks ago.  

After feeling good enough over the weekend to be up doing housework and light yard work, I woke up feeling pretty awful this morning.  I don't know if I did too much over the weekend????  I felt good enough to do it, so I don't know how to regulate what I do.  I woke up with my legs in spasms (esp. my right leg, where my pelvis was most injured), agitated, cold after being so unusually hot since the accident.  Before I was able to lay in bed comfortably, but today I am not.

Can anyone help me know if this is what withdrawal feels like?  I am just now sure what to expect.
I also take imitrex for migraines (I have been having to take it a lot) and I take cymbalta for neuropathy as well as for depression.

I would appreciate your help.

~nikilee

[KQ111]

In answer to the question, NO, not everyone goes through withdrawal.  I was on 4 5/325 hydrocodone a day, finally got fed up with how miserable they made me feel, so tossed them and went cold turkey.  I experienced not one craving, headache, pain, anything except a slight worsening of prolonged diarrhea (years) that might or might not have had anything to do with going off them.  This is not to say I don't recommend more caution than I used, but some do not have withdrawal, my theory is that I have enough absorption problems that perhaps I wasn't up-taking them.

I also recommend everyone experiencing miserable symptoms that might or might not be withdrawal to research herbal supplements, etc., particularly those that support (NEVER DETOX!) the liver and the adrenals, because the stronger you are the easier it'll be.  Also, never forget sound nutrition--no gluten, caution with grains, no or very little sugar in ANY form, and eat or drink lots of foods rich in basic vitamin and minerals, and NO processed foods.  If you have an illness that is the reason for the pain meds to begin with, bear in mind my experience:  I've almost died several times and pretty much had 25 years of my life ruined from a perfectly treatable illness because inside-the-box mainstream medicine runs 15 to 20 years BEHIND CURRENT RESEARCH AND KNOWLEDGE.  You must find a really good natural healer or a medical doctor who "gets it," and understands things like P-450 enzymes in the liver as being behind chronic illness, adrenal exhaustion, unusual metabolic conditions, rebuilding gut microbes, etc.  

Hugs, love and understanding to all chronic sufferers!
Kate in New Mexico

[Nikilee]

Oh my goodness, Jan.  I am glad I asked, because I would say you are a quite heroic and brave person.  I cannot imagine living with all of those very difficult things.  From what I can tell, though, it seems as though you have a "higher power" that you depend on to help you.  Is that what keeps you going?

I would say that you are a HUGE blessing to this community, and I am thankful that you are so willing to be on this forum to help others.  Thank you for not "belittling" the ones (like me) who are not nearly so bad off, and yet are very scared of the circumstances they find themselves in.

I have found so much help here, so much "empathy", and am thankful for this age when we have the internet to be able to use it for good (as in this forum).

I just wanted to say "thank you"...to you and to all the others who spend so much of their time here, answering the same questions over and over again.

Blessings to all of you,
niki

[BOK2Bjan]

One of the side effects of narcotics is to give you energy (until you get tolerant of that effect too).  So, you can often go and go as you said.  You've already learned that there's a price to pay after doing too much though.  I think you have to use your experience from that to will yourself to take it more slowly than you even feel.  Try to be consistent in doing just a little every day (I wish I could follow that advice!!)  Sounds like you're on your way to recovery.  It's just always surprising how long it takes.  

My pain comes from several sources.  Systemic Sclerosis causes joint pain in all my major (and some minor) joints.  My hands swell and inflame terribly also and can hurt REALLY bad.  My elbows are a big source of pain too.  It has damaged my esophagus and entire GI system, lungs, heart, and all connective tissue.  MS causes pain in weird places, but my leg, ankle and hip on the right side is very painful, and spasticity is causing several muscles to hurt.  

I have Interstitial Cystitis, which is a disease of the bladder that causes small hemorrhages on the entire interior surface.  This causes pain and lots of problems.  My C-spine is quite a mess.  All discs have herniated and at C3-4 is a bone spur pressing on a nerve causing pain, tingling and numbness down my arms.  At the Thoracic level, I have arthritis and kephosis, and the lumbar spine at L5 is herniated as well.  I also have sacroilliitis, which at times will bring me to my knees.  

Sleep apnea and Pulmonary Hypertension means I have oxygen and CPAP machines running all the time.  I walk with a cane but developed foot drop from the ms and so will be getting my brace in about a week.  Hopefully it will help my right foot and leg pain.  But back pain means I can't walk very far or stand without support at all.  

Because of my esophagus and GI troubles, I reflux whenever I even dose off.  The esophagus has Barrett's and no motility and so "stuff" just goes up and then a nerve problem allows it to go into my sinuses.  I also aspirate into my lungs causing fibrosis and pneumonitis & pneumonia.  That gives me high fevers which cause all my pain to increase.  So, pleurisy pain, GI pain, jaw pain, etc. etc. round out the deal.  I'm a walking (really lying) mess.  I've gone on long enough.  Sorry.

Thanks for asking - aren't you glad you did?  lol :)  Blessings, Jan

[pickle28]

Please don't let the drugs fool you yes you may feel better, but, remember that you could hurt yourself more.  It happened to me and now I'm facing another back surgery.

[pickle28]

It has been my experience that you will go through the withdrawals.  I was on most of the same meds as you.  When I took myself off of them you will feel worse than if you had the flu.  At night was my worse times.  Couldn't sleep, night sweats were the worst and the dreams weren't any fun either.  Good luck.

[Nikilee]

Jan, thank you SO much for all of your encouraging words.  I appreciate, especially, that you say it is okay to go "slow".  I felt so bad when I had to put that tiny 12.5 patch on...your words make me feel so much better.

What is the nature/cause of your pain?  (Or...if you have it written out somewhere in the archives I can hunt it down.

The thing that struck me today is that...if your pain is mostly covered up by pain medicine, how do you know what sort of activity you should let yourself do?  My husband was shocked at how much I did over the weekend, when I previously had not felt like it.  Suddenly I felt like I could go and go...but that is because I have the medication.  I guess the fact that my "main" problem stems from broken bones makes this all a little different.  If I can't feel that they have been broken and are hurting, I don't know how to regulate my activity???  I am thankful that I can feel this good (finally).  But, this is when you see where pain has a purpose!

Thanks again, Jan...you have given me many wonderful words of advice.

Blessings to you, too

Niki

[BOK2Bjan]

I agree that your symptoms were no doubt a combination, however, the restless leg feeling is definitely a withdrawal symptom.  I have had that before on a variety of different opiates.  I've been on the patch, as well as every other narcotic I've ever heard of, and at a high enough dose, weening off is going to cause symptoms.  I haven't found a way to do it slowly enough to not have SOME discomfort.  It's just the nature of our bodies.  They effect the CNS and when they're taken away, our nerves react a bit in over-drive until they readjust to not having the drug present.  Unfortunately, it can take quite a while.  What is in your favor, as I said previously, is that although 10wks is quite a long time, it isn't years, and so should be a somewhat quicker process.  I think you PA was right to suggest tapering 12.5 at a time, rather than 25.  You'll get to the level of pain medication that you actually need for your post accident "condition" / "reality", and I wouldn't feel bad about it taking some time.  You're doing a great job making sure you're not taking more than you need - that's the important thing.  Right now, you "need" the drug to come off of it.  That's still a medical necessity.  

Pain management is a medical specialty that is relatively new.  As such, there aren't enough of them to handle the patient load.  I think they are all operating about the way yours did.  I had a great pain doc before my insurance changed and I really miss him.  He was wonderful.  He was hurried and busy, but wonderful.  I was able to see him at each of my appts so I guess I was lucky.  There isn't one I can go to at all now, as I have Medicaid, so my internist manages the medication my pain doctor prescribed.  I haven't changed anything or increased doses in a couple years.  My condition has worsened yet I don't want to increase, so my pain gets worse all the time.  The fact that our bodies become tolerant is a frustrating thing, yet it is good when we need to get used to other drugs that are needed for conditions such as blood pressure, heart conditions etc., yet have side effects of drowsiness or nausea etc., and we're glad that we accommodate to the side effects such that they go away.  With pain meds, you could think of it that the CNS effect of feeling less pain is a "side effect" that our bodies get used to.  In that way, it's no different than many drugs.  Narcotics are treated so differently because so many people experience pleasant feelings that they then become addicted to. No one gets addicted to nausea, dizziness, or drowsiness usually! lol.  Anyway, that's a long winded way of saying - don't worry about it taking a while - go slowly and it will happen.

Blessings to you, Jan

[Nikilee]

Thank you SO much for your comments!  I do feel like I learn more here than from my doctor, sad to say.  

Today, at my monthly regularly scheduled pain management appointment, the kind PA that I always try to see (it is almost impossible to see a doctor unless you are having a "procedure") was so overbooked (and apologetic about it) that he did not have much time at all to answer my questions. I told him that it was too bad that the practice does this to him, because he is such an asset to the "business".  The way things go at my pain clinic is they way overbook patients, have a few PAs to see them while the doctors do procedures. In between procedures, the doctor (s) write prescriptions for the regular patients who come to see the PAs.  Sometimes we sit an hour, after our appointments, just waiting for our prescriptions.  And the PA told me that sometimes a doctor isn't even around so I don't know what happens when prescriptions need written.

SO...all I did was get to tell him about Monday, he confirmed that it probably was withdrawal (although I think I agree with you Molly, about the combination), and said I would need to wean down by  12.5 instead of 25.  He told me to try to go to 50 in about 2 weeks.  And to choose a day that I can have a really bad day.

I will be changing to a different pain management doctor about the middle of this month, with the hopes that I will be at a practice that will return my calls and that
takes the needs of the patients more seriously.  I am hoping that I just got into a bad practice, and that this isn't the way they all operate.  I would love your comments about that as I will probably be relying on pain management for a long time.

You all are wonderful to put up with my long-winded questions and explanations about my situation.  I think, again, that so much of this is my fear of the unknown...and no one told me what to expect.  This forum, and all of you patient "friends" who have gone before people like me, are simply invaluable.  I appreciate every single comment I receive and take it to heart.

Very gratefully,
nikilee

[Mollyrae]

Hi Niki:

After reading your story and the trouble you're having, I have to chime in. I feel strongly that this is related to the fentanyl patch and the fact that you dropped to 50mcg's.

Here are a few things I am certain about the patch. The stuffiness you are experiencing is definitely caused by the fentanyl. It did this to me about a month into use. I now experience this on a nightly basis. The leg spasms are also related to the drop in the amount of the fentanyl. As I also decided to start using the patch every 72hrs. from every 48hrs., I experienced an increase in spasms and restless legs during the third night of use. My body was accustom to having a new patch replace the old one every 48 hrs. and since I had changed the time frame, my body reacted.

What ppl don't realize about the fentanyl is the potency of the drug and how fast your body becomes accustom to the amount. It will take time for your body to re-adjust to the new amount. I wish there was more information included with the fentanyl on what to expect when a person lowers the dose because I feel that your whole body's chemistry changes when using the fentanyl.

Please discuss this with your Pain Management Doc. I'm sure that he will re-enforce my comment. I have talked in great length with my Doctor who prescribes my fentanyl and he said that because of being one of the most potent pain meds on the market, it can cause many problems with one's system. Fentanyl is not for everyone. Many ppl cannot use the patch because of the potency.

I feel that if you give your body a chance, you will over come the discomfort and the symptoms you are experiencing will subside. Please take care and good luck,
Molly

[TheArtDisarray]

First of all, I'm very sorry to hear about your pain, I know how hard it is to live with it from day to day (as we all do, I'm sure). My best answer to what you're experiencing is that you're having a combination of withdrawal and strain from the extra physical activity. Fentanyl and dilaudid are both pretty strong opiates, and 10+ weeks of being on such a strong pain medicine is definitely going to cause dependence. People who are just tapering down strong opiate pain medicines such as Fentanyl or dilaudid experience mild withdrawal symptoms, you don't have to completely stop the drug to experience it. Stopping a medicine like yours cold turkey is not a very good idea; your body is physically dependent on the drug after being on it for a certain amount of time, and it will cause some pretty unpleasant and possibly dangerous reactions if you do. If the 75 mg patch is causing respiratory depression, dropping down sounds like a good idea. But I strongly suggest that if you are feeling like you need to stop the Fentanyl completely, work with your doctor about it, they will help get you on a tapering schedule that isn't harmful and will have the least discomfort, withdrawal wise. I know it's hard to depend on medication; I'm only 20 years old and a chronic pain patient, who has to rely on opiate pain medicine just for basic functioning. It's a long road to walk, but it can be done.

As for your congestion, personally I've never had trouble with narcotics giving me congestion, nor have I heard of anyone with that trouble. You might consult with your pharmacist or your doctor, they would probably be able to recognize if it was a side effect of the medication or not, and give you advice on what to take or do to help with it.

Also, remember that there is a very big difference between dependence and addiction. Addiction is the abuse of a drug, dependence happens naturally to people that take it regularly for a certain amount of time. It's just a natural reaction to the medicine; you're not an addict if your body is just dependent on the drug. On the other hand, if you find yourself taking the medicine when you don't need it for the pain, start taking higher doses to get the same "effect", or crave the drug's mental effects, that would be a cause for concern. As it seems from your posts, none of that would apply to you, so I wouldn't worry about the addiction aspect.

Sorry for the long winded post, lol. I hope your appointment went well, and I hope you can get a little information from my post. Best wishes.

[Nikilee]

Thank you all for responding to my post.
I am going to try to be specific about what happened to me on Monday and see what you all think. (Oh, and Tuck...to answer your question about why I am posting on the addiction community.  When I first found this forum, I did not realize that I was looking at the physician's side of the forum listings, and I did not see Pain Management there.  So, I thought the closest forum to what I needed was the addiction forum and that is where I made my first post. Nick on that forum told me about the Pain Management forum, but I already had some people answering my questions on the other one.  I have never had any addiction troubles.)

I will try not to make this too long, but feel that I have to preface with this.  Besides having chronic pain before my accident, I also struggled with migraines.  I am not sure they are typical migraines, but the triptan drugs are the only thing that makes them go away (like imitrex, maxalt, etc).  I also take Cymbalta for depression and neuropathy in my feet (not diabetic) and so I have to be careful on days when I take imitrex that I don't take it too closely to the Cymbalta, since they both affect serotonin levels.  If I ever forget to take my Cymbalta, I get the strangest little shock like symptoms in my head...very uncomfortable.  I feel them and hear them. Sometimes, if I have taken imitrex I get the same feelings later, as if something is leaving my body just like with the Cymbalta.

For the past couple of weeks, I have been getting a stopped up nose EVERY evening..that is somehow tied to these headaches.  I don't think it is a sinus headache, because once I take the imitrex the problem with my nose goes away. (A question would be...do narcotics play with your sinuses?)  

The thing that made me decide I needed to drop down on my patch is that I felt like I couldn't get enough air in my lungs while breathing and I had these really funny sensations in my ears and it just seemed like maybe the 75mcg. patch was overpowering me.  I guess I got afraid of "respiratory depression".  That is why I dropped to the 50mcg. patch, after 9 weeks on the 75.

I dropped to 50 last Friday.  My lung thing felt better, so I thought I was on the right track.  But I was still having my nose get stopped up in the evening...and I was waking up with a migraine (and took imitrex to make it go away).  I think I mentioned that I did a lot of work over the weekend.  I have been sleeping downstairs by myself, since I had been in so much pain from the fall and was having to sleep on pillows.  It has been lonely and I wanted to move back upstairs (but with 3 guys living up there, it had gotten pretty gross).  So I cleaned the upstairs on Saturday, and then on Sunday worked getting Christmas lights untangled from overgrown bushes.  Both days I worked all day, but it was because I felt good enough to do it.

Then Monday morning, I woke up with a lot of pain in my legs, and the rest of the day I had these horrible jerks and spasms, I was agitated and more depressed than ever...it was awful.  The spasms were rhythmic, and felt like when you hit your funny bone or get your reflexes checked in your shins.  Just constant.  I was going nuts!  And scaring my husband!  I could not settle myself to do anything.  My internist would not help me, the pain doctor would not return my calls (they never do...I am so frustrated with the pain management practice).  We called a pharmacy that deals with wholistic medicine, and the pharmacist said all he knew that might help would be a specific king of magnesium. I had been taking magnesium all through this, but he said that this was highly absorbable and might work better.  My husband rushed off to get that and I started taking it. Also, I finally relented and put on a 12.5 patch, and was so sad to have to do that knowing that it will make getting off the patch an even longer time. And...I also asked my husband if we could just call the emergency room nearest us and see if someone would advise us.  The woman who took my call must have asked me an hour's worth of questions, being very thorough.  It turns out she was from some sort of central dispatch, and she was going to send my "chart" to whatever emergency room that was closest to me so they would have it if I chose to go.  Bottom line, by the time she finished asking questions, my muscles had started settling down.  I probably went to sleep about 3 am, woke up with a migraine, took the imitrex...and then when I got up I felt okay, and had a pretty nice day yesterday.
And, apart from the lung thing today, I feel pretty good.  Tomorrow, I have my scheduled monthly appointment with the pain doctor.  I am going to try to go in armed with questions.

So, Tuck...you mentioned you didn't think any of this was withdrawal.  What do you think it might have been?  I was so specific in this post so that maybe someone could tell me something that I am not seeing.  I NEVER want to have a day like that again, if I can help it.

Maybe I need to just stick to this forum, and not look at the addiction one.  Perhaps when they talk about coming off of drugs, it is somehow different than coming off when you are not addicted.  I think I am afraid of my body getting used to the medication, and so getting addicted.  Lots of ignorance thrown in here, I am thinking.

I appreciate ANYONE who takes the time to read this long post and respond.  I am really sorry to be so wordy.  I just felt like I needed to try to be very specific if I am to get any good advice.  And, of course, I will rely on what the pain guy says tomorrow.
This is a wonderful forum.  I am so thankful for all of you!

~nikilee

[Tuckamore]

I doubt that the symptoms you are experiencing are related in any degree to withdrawal. If you are recovering from a MVA or any accident, it will take you time for your strength to return. Not only physically but there are always some emotional issues that are tied with trauma.

It's not clear to me why you are posting in the addiction forum, though it is a great community, it is usually for those with addiction issues. Have you been addicted to medications in the past?.....if so are you suffering similar symptoms of past withdrawal?

Please let us know how you are doing. I will look forward to your posts. Take care and hang in there. We are here for you.
Peace,
Tuck

[worried878]

i would assume it is the patch vs the dilauded considering the doses u were on..but for only 10 wks this should pass quickly...if u have no history of addiction and are not an addict..u will come out of this just fine..keep ur dr informed and u may learn alot both here and on the addiction forum

a few symptoms of narcotic wd are..runs, anxiety, depression, extreme fatigue, a feeling that sumpin is missing,,the runs would apply to anyone tapering of narcotics..maybe a bit of anxiousness and fatigue as well...if u start wanting to up ur dose to feel better...then please talk to ur dr...be safe

[BOK2Bjan]

Hi there.  I'm glad you're up and around.  That's wonderful to feel a bit like your old self I'm sure.  It's not so great that you're feeling bad today though.  I'm sorry you're having to go through so much.  It is normal to have trouble readjusting to normal activities, even without the narcotic issue.  But, some of your symptoms are what's included with withdrawal.  Agitation, temperature control being off and being generally uncomfortable are things that happen.  That doesn't mean I know that's what it is though.

I believe you've been on the narcotics long enough that you would have withdrawal.  Everyone's body becomes accustomed to them being there and you have symptoms of withdrawal when they're taken away.  It's unfortunate, but true.  The good news is that you haven't been on them very long at a high dose, so it shouldn't take long to go through any withdrawal.  

Take it easy getting back to a regular routine though.  When you feel up to something - it doesn't mean you won't suffer for having done it.  I get that lesson delivered to me all the time!  I have to get things done when I can, though, so I just suffer through.  You've had an accident, so your case is different.  Take it slow.

Hope you feel better soon.  Blessings, Jan