Posted , 13 users are following.
Ok so here I am. I've gotten from 100mcg to about 20mcg but this last 25 is killing me! I'm going crazy, not sleeping, anxiety and God the restless legs every.single.night! I'm sleep deprived and the pain is more intense. I'm going crazy!!!! My legs will not stop! Nauseated etc I can handle but not this jumping all the time. Does it EVER go away?
0 likes, 120 replies
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donna03256 melissa7471
Posted
donna03256
Posted
Still having withdrawal symptoms.
I see PM in 4 days. Ugh!
donna03256 melissa7471
Posted
melissa7471 donna03256
Posted
Yes, I started this thread 4 months ago and it's still active. I've now been up for 3 straight nights with restless everything....legs, arms, entire body so I am quite tired and frustrated. My legs hurt. Friday night I had my window open and it was in the 40's. Well, my body was so restless, I was completely soaked! It's just crazy, After getting 6 nights of sleep, I really began to think I was I the clear with the RLS but not so much yet. I had some anxiety this afternoon but it's probably the lack of sleep, There was a documentary on Fentanyl and the destruction it causes this afternoon and I DVR'd it because I didn't have time today. Is the Neurontin helping at all?
carol77581 melissa7471
Posted
Melissa I am with you the past few days. Today I want to cut my legs off. I realized some of this seems to be coming from my hips too which is radiating down my legs. I just took a double dose o Vicodin out of desperation. I thought I was getting this under control. Not gone but manageable. I also have headaches. Wondering if the change in temps or the past storms causing changes in barometric pressure causing the flare up or am I just desperate for reasons. Although I sleep about four hours a night with sleep aids it's rough trying to get up and be out the door for work at5:30am. Also had big flare up of my ankle but that was my stupidity trying to do some jogging one minute then two or three of walking. Did that seven times and paying the price now. I'm just so sick of being incapacitated and people are sick of hearing me complain. Ugh. This has to get better somehow.
donna03256 melissa7471
Posted
The withdrawal is horrible. Yes, the Neurontin is helping with the RLS. But like you, I have the sweats and then the chills. No appetite, no sleep, and the return of pain.
I have been going through boxes of paperwork and shredding.
My daughter (27), has been helpful. She went to Church today and saw my friends. They are worried and so am I.
I am so sorry you are still having withdrawal.
I did read the posts here and I understand the Mylan patch. This is not what I have. I am on the other, with the gel med on the patch and the sub-buccal.
The Mylan patches did not work as well.
Thank you for your support!
Hugs,
Donna
melissa7471 carol77581
Posted
Eventually, this insanity has to stop right? Last night I asked God to please not let me be stuck with this for the rest of my life. The ONLY time I've ever had this was if I was late changing my patch or forgot, and now since I've been going through getting off the patch. The thing is, my neurologist told me that Fentanyl actually will keep RLS away, but I didn't have it before the patch! The essential oils seemed to be helping - I got 6 days without any symptoms at all but now I know I've been up 3 nights, my legs ache so bad and I'm exhausted.
I know how bad you've been wanting to rehab that ankle but you've got to not push it or it will set you back. Take it slow.
We are in this together and we have to keep going. Write back...
Hugs
donna03256 carol77581
Posted
I am so sorry you are having a rough time too, and wonder how you can work with this?
I have not worked since 95, dx. with lupus.
Sending hugs.
melissa7471 donna03256
Posted
Your stomach should mellow out in a week or so. The aches and chills lasted about a week. I'm so glad the Neurontin is helping with RLS cause I'm about to lose my mind with mine! I'm on Requip 4mg XL taken once daily but I've been on it since December and it's just not working.
Yes, I used Mylan and had to tape my patches to wean. You are going through the worse part of withdrawal right now. It won't last that long but I'm having a terrible time with residual effects, the RLS and anxiety. I believe it's called PAWS - Post Acute Withdrawal Syndrome.
I'm just trying to do the best that I can but I'm not very functional right now. Did you jump from 100 to 75 in one shot? Some people cut their patches to keep from jumping so far down at once. Mylan's couldn't be cut.
If I'm not making sense, I apologize. Hugs!
donna03256 melissa7471
Posted
Yes, this has to stop it can't go on forever.
I cannot sleep....
The RLS is better but the sweats & chills are hard to deal with.
Thank you for your support!
Hugs
Donna
donna03256 melissa7471
Posted
Yes, I began taper 2/14 @ 175 mcg. and 200 mcg. sub-buccal 4 x a day!
PM has me on a taper schedule.
I am at 75 mcg every 72 hrs. now and really feeling it! My back pain is back, it is hard to stand and walk. All of my disks are flat, and I have spinal stenosis (severe).
I think this taper is very quick!
What are they going to do if I have Melanoma?
Hugs
Donna
Gman109 melissa7471
Posted
I wonder if anyone will read this thread, or recheck it.
i`m 44 year old male, one of the 10% of males afflicted with SLE/Lupus, as well as IBS problems (last colonoscopy I had 15 macro polyps removed, up from the 12 just six months before...).
I've been on Fentanyl for 7 years now. I was up to 175mcg/hr for a while, got down to 50, and I've just cold turkey'd three days ago. The RLS and restless jumping arms is incredible right now, I normally can type at 100wpm, with all my mistakes here, I'm going about 5wpm.
I've also recently lost my mother, 4 hours before she brought me into this world at 1am on Oct 21 1973, on Oct 20th 2017. I was her primary caregiver for the last 4 years, she wasn't ambulatory other than walking with a walker at 1 step per 5 seconds to get to the bathroom. The last 2 months she was bedridden completely, and declared palliatve, and I was her only care giver thanks to home care nurse budget cutbacks and rules (they changed it from 2 visits per week, to 2 per day, the day she died, thanks a lot). They were great when they came, but how am I supposed to roll her and hold her up on her side (she had completely lost arm and leg function and was 86 lbs down from her normal 140lbs at this point), and change her diaper at the same time? It was virtually impossible.
Anyway, she has left this world now, and since I'm not having to be relied upon to care for another now, I decided to try and get off this Fent.
Some pain returning, not too bad, I can handle that I think, but the other symptoms so far have been nuts. Going from 175 to 50 was remarkably easy. Going from 50 to zero is NOT.
Anyhow, hope someone may see this and answer with some advice.
melissa7471 Gman109
Posted
Gman,
My condolences on the loss of your mother. I know what it's like to lose a parent and it isn't easy.
I don't think I understand why you've decided to go cold turkey, but I'm very happy you are getting off the Fent. I can only tell you my experience and it has not been easy. I had restless arms and legs immediately. I started detox July 2016 and my last patch came off Nov. 27th 2016, so I've been off almost 1 year. So, for the past year and a half, I've had RLS and it's been hell. I can't tell you how many times it caused me to fall out of bed. I would thrash in my sleep so hard on the nights I did sleep (it was nothing to go for a week w/ no sleep). Then I got a bed rail because the last time I fell out of bed, I injured myself. Anyway, I was on Ropinirole 4mg XL for over a year and it never worked for me. However, a new doctor switched me to Gabapentin and Mirapex .05. Initially it didn't work either, however, 2 wks ago she increased the Mirapex to 1.0 and for the past 2 weeks, I have not had any RLS or periodic limb movement. I am incredibly relieved. It's been 36 months of hell.
Also, I had such severe vomiting and diarrhea that I lost over 30lbs during detox. The entire process was the most difficult thing I've ever experienced. I'm thankful I made it because some people don't. This drug should be for end of life only, in my opinion. Also, the last 25mg was the absolute worst! If it wasn't for this group, I couldn't have done it because my dr was no help.
Hang in there and ask your dr for relief of your symptoms if that is an option. Please let me know how you are doing. You can do this but it won't be easy.
Melissa
karenlh23 Gman109
Posted
I’m so sorry for your loss, taking care of a and losing a parent is not easy at all.
I was o Fentanyl for over15 years, I have juvenile rheumatoid arthritis. I was on 75mcg- 200mcg depending on pain and many surgeries. I like you and many here wanted off of Fentanyl.
My pain Mgmt dr helped me, but the taper I feel was too fast (30days)
It’s a brutal withdrawal like others have said. It will take a full 2 years for your pain receptors to return to your normal.
I have been off now for 21 months.
The fatigue and pulling muscles and anxiety were really rough. But you hang in there it will definitely be worth every hard day!
You do need to be under the care of a dr. They will give you meds for some of the withdrawal symptoms.
Each month I feel better and better now!
I agree it should only be given as an end of life medication.
You can do this...best advice I received on this site 19 months ago was...”it will take 2 years to get through this withdrawal!...I realized then my symptoms that continued for months in months were normal and I was less afraid of what I was going through! Although Knowing I had a 2 year recovery did scare the heck out of me!!! I thought can I do this?? But there was NO other option, I wanted my life back. The first year for me was very hard. Knowing there would be an end helped me to know I was going to be okay!!
Please contact a dr to help you through the initial withdrawal and you probably should taper slower then 50 to zero.
Hang in there, you will get through this!
Take care, Karen
melissa7471 karenlh23
Posted
I'm a little concerned because I haven't heard anything from Gman and he was the one thinking no one would respond to him. I really hope he's ok.
I'm glad you wrote also. I'm also glad you were able to get off the Fent. The 27th will be my first anniversary of no patch. Today I was cleaning out my bathroom cabinet and found 2 different boxes of patches (my wife had hidden them back when I was detoxing and hanging on by a thread and ready to put one on), and it really did a head thing to me, but only for a second. There's no way I would put myself through that again. This group was my saving grace. Their encouragement, talking me through the rough patches and advice was irreplaceable. Absolutely incredible people, everyone in different phases of withdrawal or detox.
It sounds like you have everything together and that's great! I'm starting 3 weeks with no RLS since my medication was increased. But now, I'm dealing with insomnia because I'm not used to sleeping after almost 18 months of RLS.
I'm so sorry to read that you have juvenile RA. Living with that has got to be tough. I have Lupus (SLE), and a few other things but I'm hanging in there. We have to, right? No other choice.
I hope you have a wonderful Thanksgiving (if you're in the U.S), and I hope we hear from Gman soon!
Take care,
Melissa