Fent withdrawal and restless legs

Tom,

I hope you never have to withdrawal from the patch. I hope your doctor doesn't arbitrarily decide to stop prescribing it as mine did. I don't know where you live but in the U.S. they are really cracking down on its use. My dr won't prescribe it OR any other pain medication anymore.

It actually has been a positive thing with exception to withdrawals because I was more of a prisoner to the Fent than I thought. And I built up a tolerance just like you have. But we keep building up tolerances as we increase it, then what? Some of us have become advocates for using Fentanyl for end of life situations only. I started my journey back on July 17th and I'm still going through it. I've been off completely for 37 days and still withdrawing. I wouldn't wish this on anybody. For example, this afternoon I had so much neuropathy, I couldn't lay down, sit down or stand up. I was wishing I could suspend myself in mid air. My nerves are still coming alive from being depressed for the last 12 years. The Fent cause central nervous system depression, but you don't physiologically feel it. Now the nerves are causing all kinds of pain. I thought it was better but today has been brutal, and this is only one symptom of withdrawal. This forum has been a lifesaver. Some of the people here have been with me from the beginning. If it wasn't for them I'd be lost because my prescribing dr didn't have a clue about helping me get off this stuff.

I really really hope you don't ever have to go through this. But if you ever do, we'll be here.

Melissa

Thanks, Melissa.

Yes, my GP will NOT prescribe further pain meds. I tried to get him to give me ONE additional 10 MG Hydro/day to alleve the pain at night so I could sleep better, but he refused, saying that only a pain clinic can prescribe it...that their office no longer writes new opiate prescriptions. However, he still fills what I have been taking for the past 5 years...at least so far. I'm 66 Y.O. and probably don't have many years left. It would be a shame if they cut me off at this point.

Here's what's interesting. My dr made an appt for me to see a pain management dr and the night before my appt, the pain management clinic called me and said the dr didn't want to waste my time or his, thst he saw I was on the patch and he cancelled my appt because he doesn't prescribe Fentanyl. They cancelled my appt! So now that I'm off, I'm trying to get another appt to see what they will do.

Tom. So sorry for your suffering. I am 60 days off the patch and will say that this is such nasty stuff. Going up in strength will only last awhile before you need more. Also I had gone from 3days to every 2days of changing because I would start withdrawing. This meant I had one good day and one bad. Plus I left the old patch on for one day when I put on a new patch. I would not recommend because this meant I was on 100mg a day and not 50 as prescribed and although gave me one good day, it made the withdrawal that much worse. Dumb me went off cold turkey on 11/3/16 after 16 years. After 6weeks of pure hell I now only have semi hell on most days with restless leg pain but to a much lesser degree.

If you just went on the patch try to talk to a pain management counselor. If there is an alternative to this awful drug I hope they can find something for you.

Have you and Melissa tried a Tenz unit for pain. This seems to help with crazy firing nerve endings. Melissa and I have shared many similar withdrawal symptoms including blisters all over the body to extreme RLS nausea and diarrhea. My fear for you is the higher you go the worse the effect it will have on your body. I know it's easy for me to say since I am not sharing your pain. Please keep us posted. We are all here to try to help with support

Let me know if you have any luck with pain management. I'm not sure what they do. I already have the Tenz unit, tried massage but that made me really sick sending toxins through my body. I have had some form of illness since I went off the fentanyl. 3 weeks flu and theee weeks upper respiratory with sinus infections. Still coughing and can't get a break. I'm back at work but want to die each day trying to sit all day. I would love to know what they actually offer for pain management. If it's just talking like an AA meeting I'll pass. I know they do not offer pain killers so what do they do. Please keep me posted on your progress with an appointment and how it goes. Maybe I have a misconception about the hat they do. Thank and hope this is a better yearn. Carol

Nice hearing from you. I'll try to find my note to Actiq so you can see.

I'm still extremely hypersensitive with sight, sound, touch and feel. In fact, I'm right now at the theatre with my wife but had to walk out to the lobby because it's just too much (trying to watch a movie). A Tenz unit is totally out of the question right now. I sure don't want Tom to go through what we've been through but he may have no alternative to the patch, but more than likely will continue to need higher and higher dosage as time goes by. But we're here for him that's for sure. I'll see if I can find my update to A and send to you as well. Thanks for writing.

Melissa

HERE IT IS:

Hey Actiq -

I know it's a busy time right now for everyone but I needed to stop and take a minute to communicate with my lifeline (you). Here's the update.

I'm on day 34 with no patch! I feel so much more awake, I'm more active and I'm more alive! God so help

me I'll never go on Fent again. My stomach has straightened out with a few exceptions. Every now and then I have trouble (today) but at least it's NOT constant! The legs are still a problem. The nerves are still coming alive. I'm having increased pain especially in the evenings in my legs and fire in the bottoms of my feet (no longer in my lower legs. Thank God that has passed). What's happening is because I'm so much more active, by evening the pain in my legs/feet is pretty bad. I'm in a catch 22, there are still most days that I have RLS during the day, preventing me from being able to lay down and rest so I'm moving all the time and by 4 or 5 in the afternoon I'm in a lot of pain, not to mention joint pain from Lupus.

But at night I'm still fighting constantly with RLS so I don't get much of a break. I am sleeping better getting 2-3 hours a night. But the only way to get that few hours is to take 2 hydrocodone at once, and I don't have many left and not much hope of getting more although I am trying to get an appointment with a pain management doctor. Obviously the

Requip isn't working. I spent 2 nights at the sleep lab, the first one they sent me home early unable to complete the test because my legs wouldn't stop and I never went to sleep. They had me back last week another night and they said I got almost 2 hours of REM sleep and once I went into REM my legs stopped. Anyway, my follow up with the Neurologist that is helping me is JAN 9th. The sleep lab people said obviously the Requip isn't working so it needs to be changed. So basically my news is mixed. The thing I'm happiest about is feeling ALIVE for the first time in a VERY long time. I'm still hoping the new type of pain - neuropathy in soles of feet and forearms and fingers that started with this last push of 25mcg will subside. It already has in my lower legs like I said. I'm still sneezing a LOT. I still have sores developing. In fact, I called to make appt with dermatology but my dr is no longer in business. I'm interviewing a new primary care physician on Tuesday so we'll see what comes of that. And hopefully now that I'm off the patch I can get an appt with pain management (let me remind you - he refused to see me when he found out I was on Fent), so I'll keep you posted about that.

I know I've written a book here, and I'm sorry to bother you during this family holiday time but I needed to touch base. I guess I'm looking to hear that I'm not going to be stuck like this forever LOL! I'm still sleeping in the guest room so I don't disrupt my wife's sleep and she appreciates it. I hope this finds you well and your pain controlled as much as it can be, my friend. That goes for everyone reading this as they're getting off this dreadful medicine.

BIG HUGS XOXO

Melissa

Funny or should I say ironic but I can't do movies either even with the new recliners. I start bouncing around and shaking every one in my isle since the seats are attached. Something about the theater sets my legs off.

Hopefully your wife can retell the movie when you go to bed. Sorta bedtime story so you can relax. I'll check out your other post

That was the first attempt and last at the movies for now LOL! Also, Im still sleeping (if that's what you want to call it) in the guest room. I don't want to stay and keep her awake kicking. She appreciates it and she's been so supportive throughout this process. I'm very fortunate (35 years strong). She's a trooper.

Anyway, I can't even watch tv - it's too much sensory overload, I don't know what made me think I could sit through a movie. It amazes me how hyper-sensitive I am, it effects sight, sound and touch in a major way. My body actually vibrates sometimes and it drives me nuts. Also, one other new thing. When I do sleep, I wake up with my heart pounding! Every time, no exceptions. Also still having sores and sneezing, etc. I tried to call my skin dr but he went out of business and now a cosmetic surgical group took over. 😞

Let me know how YOU'RE doing.

Melissa

PS - Why were you flagged?

I have been sneezing constantly but I thought it was the new carpet or new heater cleaning out the ducts. Hmmm. Never thought about this being a symptom

I had a thought. I had prednisone shots for my hips about a week after going off fent and a B12 shot. This helped the nerve pain in my legs and feet. The shot was in the muscle. You should inquire about this. I don't know much about lupus so maybe not. I had the same burning and I think plantar fascia but I am also recovering from the sprained ankle with torn ligaments. Since our conditions are different this might not work for you but worth asking

I really wish I could come up with something to get you some relief. Fortunately I have 120 vicoprofen a month to help me with pain and discomfort. I'll keep searching and thinking

What about cool gel packs on your feet?

Carol, Actiquser, Pointer99 (Mark) and anyone else interested -

?

I had the first appt with a Pain Management Dr this afternoon.  I was pleasantly surprised to find him very kind, caring and compassionate.  He did several physical tests on me and everything substantiated the type of pain I'm having.  He's going to try me on Cymbalta and leave me on Hydrocodone for now.  The Cymbalta should help with all the different types of pain I experience.  He also wants to inject my back because the MRI showed significant spondylosis, however - none of that can happen until I'm calmer from physiological aspects of withdrawal from Fent.  I still have severe restless legs and arms.  I'm still not sleeping for days at a time.  The Dr said that the Cymbalta will help with all the nerve pain and hopefully my RLS.  He said the Fentanyl was originally designed for end of life patients and I explained that I was now a huge proponent of that very idea.  No one should have to go through this!!!!

I've been off the patch 8 weeks yesterday and still having problems with skin sensitivity and wanting to jump out of my skin, not to mention the anxiety it causes plus the RLS.  It was very cool weather wise for FL today and I was cold but couldn't stand to have a jacket on no matter how light weight.  Anyway, I was impressed.  The first thing they do though is have you take a drug screen which is fine by me but you just need to make sure you list everything you take.  Again this is the first visit but he was very surprised that no one had tried to address the neuropathy pain and that no one tried to give me an analgesic type of Med.  If anyone has any experience with Cymbalta,  I'd love to hear about it.

All in all, I would recommend a pain management specialist if you can find one that cares.

Virtual hugs to everyone!

Melissa

Hi Melissa,

First let me appologise for being off the radar. This is due to awaiting lots of scan results to confirm my cancer status and dealing with a teenage son, who despite 6 years boarding school has now gone to live in his own flat. Need I say more !!!   As a new single parent this is difficult to deal with. All of this at Christmas was not ideal.

I'm glad you are doing well despite the ongoing RLS which seem to really blight you. I had Duloxitine, generic name for Cymbalta for my peripheral neurophathy a few years ago. It seemed to help especially with my hands, till they doubled the dose and my side effects became unbearable, so I stopped. The side effects I got were unusual - sweating legs that felt wet and very uncomfortable, dizzyness and not feeling right. All these were intermittent. As soon as I stopped Duloxitine the symptoms resolved.

I hope this works for you, but I'm affraid I will upset you when I say look at the withdrawal symptoms under " SSRI Discontinuation Syndrome" and if you stop it after 4 weeks you need a taper programme. At least it's not a controlled drug like Fentanyl. It didn't bother me that I stopped it dead. Another one used that I had is Gabapentin and it's even more addictive so I stopped that too. I'm always being encouraged to take this.

Unfortunatly most of these drugs come at a cost so I am very wary of what I take after the Fentanyl. 

I'm glad the pain management is going well and you are feeling positive. Its a pity the RLS and lack of sleep are still there. Hopefully the Duloxatine will help. It certainly helped the peripheral neurophathy in my hands due to toxicity from chemotherapy. I went from not being able to hold a pen to write and severe pins and needles in my hands to being able to write. It didn't have the same effect with my feet/legs but it would take a miracle to deal with those.

You are now going into your 3rd month Fentanyl Free so hopefully with your new medication things will improve. You have done Amazingly well given the situation you found yourself in. Well Done Again.

Appologies again for my absence.

Lots of virtual hugs and good wishes.xxx

Omgosh Actiq I've been so worried about you!! You've made my day hearing from you! I'm so sorry about everything you're going through - I'm here for you. If I could figure out how to give you my email address, without the world seeing it I would. I don't know if you've seen the posts I've written you during your absence but they're around some where and I've been asking around to see if anyone else had heard from you. I've been so concerned. Were you able to complete your 12 wk course of physical therapy? It doesn't sound like it. I'm so sorry about everything you're going through. Did the scan results come in? It's ok if you don't want to discuss on here. Also, thanks for the heads up about the Cymbalta. I'm really hoping it will help me but I don't want to go through withdrawals again for any reason! This new doctor was so encouraging though and I feel like I have hope, but at what expense? I'm definitely going to indepth research this stuff and possibly call the dr back and ask more questions.

Gosh it's good to hear from you or did I already say that? LOL

Please stay in touch and let me know how you are!

Hugs!

Melissa

Lovely to chat again and be in the loop again. You have brightened up my day. Thank You for all your kind wishes.

Please note in my correspondence above I stopped the Duloxitine dead without any withdrawals. I was aware that is contrary to all advice but there was a concern about Serotonin Syndrome due to taking Duloxatine and Fentanyl. If I had not been taking Fentanyl or the DR increase the dose of Duloxatine it would not have occured. It was only because I was aware of the side effect of the drugs that I take and the acute onset of severe symptoms. At that time I was not prepared for Fentanyl to be stoped dead so it was the Duloxitine that went. ( I wonder why).

My 12 week pain clinic I was deemed unsuitable for so I am to attend a physio programme starting next month.

I get the scan results tomorrow.

Lots of hugs xx

Yes I read the article. I'm going to cautiously begin the Duloxitine but discuss it with the dr. Also, he's not starting slow, he's going full steam ahead at 60mg. He said my case was too severe not to. That's the first physical exam I can remember in a very long time. My primary care and I just chat. That's totally it. Going to find a new PC as soon as I can. I'd like to be over withdrawals because I don't want to make a bad impression....you know, going in, bouncing off the walls, not being still, etc. LOL! If the new Med calms me then I'll make appt. I already have someone in mind to interview but I cancelled first appt with her because of the aforementioned.

I'm sorry you weren't suitable for PT. Maybe later?

M