Fent withdrawal and restless legs

Hi Melissa,

 You have come on such a long journey in the last 15 days and we are all so proud of you. The big decision you agonized over 15 days ago means you will have a great Christmas this year and feel you have acheived a lot.

Pity about the RLS, you will find the periods of sleep will begin to lengthen, but it takes time. At least you are getting help and support from your Docs. Hopefully an increase in Iron levels may help the RLS and fatigue. RLS is also caused also by low dopamine which gives low mood. Probiotics and tumeric should help and you can google dopamine boosting foods to take that contain Tyrosine bannanas, almonds, advocados there is quite a long list. I'd try anything that might help.

Life is so much better without Fentanyl. I was reoffered it in October I said NO and I now think why did I not stop it earlier?  I am only 3 months Fentanyl free that shows that we are not addicts only were dependent. Life is for living and not in a Fentanyl Fog.

Sending a great big virtual Hug and lots of Dopamine xx

May those of you thinking of stopping Fentanyl please take inspiration from Melissa's Journey to help you start your own Fentanyl Free Journey

HI Melissa,  good to hear you are improving even if it's slow.  Sounds like you have a good doctor also.  It took me months to begin to sleep and I still take meds to do so and afternoon feel really tired but still know I am better off now than before.  Let us know what your test show.  Eat some spinach to raise your iron.  I love it with boiled eggs and corn bread.  Best wishes Susan

One of these days we hope to come to Scotland and if so I'm gonna give you a REAL hug! You are so right about the fog. I'm so alert and more energetic and able to accomplish way more even though I'm tired. Marlyn (wife) says she can now see how drugged up I was compared to now.

It's also soooo nice to have a doctor actually trying to help me even if it's our neurologist friend. I will be interviewing a new primary care dr JAN 3rd. Even if they offered me Fent to get rid of the RLS, I wouldn't do it. There's NO going back. If it doesn't resolve in a few weeks we'll try something else. My Mom has had RLS for as long as I can remember and she actually rubs HOLES in the bottom of her sheets!! I've always had a phobia because of watching her and always said I wouldn't live like that but here I am. HOWEVER - I have faith that it will eventually subside like everyone here has said. It's encouraging that it's not 24/7 like it was too! I will look into the dopamine boosting foods. Maybe that will help. Also, did you have headaches? I don't normally get them but having several a week. I'm thinking it may be the Requip but I'm not changing that at this point. Also, when can I expect the nerve endings to stop being on fire? When I told my primary dr that Neuro had put me on hydrocodone he said I better watch that! I wanted to flip him a bird. HE'S had me on it for YEARS and I'm not, nor ever will be dependent. Why is he so against giving something for relief???? He used to give me 60 pills and it would take 4-5 months for me to use them. I've ALWAYS been transparent with these meds and never wanted a sense of impropriety. I can only pray that none of his other patients are going through what I am. For him to arbitrarily say I'm not going to be prescribing pain meds to anyone for any reason at any time is very uncaring. This is why I'm meeting a new dr - NOT because I need pain relief but because I want someone who cares and this new dr's reviews are through the roof in that and ALL other areas. AND I was very impressed with the staff member I spoke to in the phone to make the appt. Oh - I forgot to tell you, my dr DID ask about this group! He asked for the website, etc. I flat out told him about you and how I wouldn't be where I am if it hadn't been for everyone here. (I wanted to add "because you left me to drown on my own" but I held my tongue).

Anyway, I hope you're having a good day and somehow finding relief. Let me know how YOU are doing.

Big virtual hug!

M

PS: It's so nice to be able to make cookies and do Christmas cards without having to stop every 5 mins to rest!

Thanks for responding SUSAN. I will get some spinach I love spinach so that's not a problem. What was the reason for not being able to sleep, was at the RLS or just being more alert and awake being out of the Fent fog ? Hugs!

M

Hi Melissa,

I'm glad you have a Dr on your side and helping you, the other Doc seems a fool and you will be well shot of him soon.

What Carol says about the supplements is correct and the tonic water has got me thinking. It has quinine in it known to help cramp which is associated with RLS. It but does not mean you have actual cramp with the RLS it's to do with the associated nerve fibres being stimulated. Low calcium level are also associated with RLS as is low magnesium so I would definatly try the supplements advised by Carol who has done amazingly well. She is also correct that things settle by about week 5. For me it was a little earlier. For me it was what I called " random pain ", I think you describe it as your nerves on fire. My peripheral neuropathy came back in my hands, my joints were excrutiating at times especially my wrists, knee joints, fingers and would settle and then the pain would reserect itself. That's your brain trying to cope with the absence of fentanyl. It should pass in the next 2-3 weeks. For me there was no point taking anything for it as it would settle only for a different ache/pain to emerge. I no longer get this.

Headaches are usually due to dehydration from either too low a fluid intake or fluid lost via the gut. Try to take at least 2.5-3 litres of fluid a day and you should find the headaches go. I would try to take a 5oomls of tonic water a day along with all the other supplemants Susan recommends and see if that helps the RLS.

A big virtual Hug to Susan and yourself for both doing amazingly well xx

My medical team said it was just my body rebelling from 15 years of the Fent. Being removed.  I don't have any other reason that I could address.  Some may have been anxiety not know what life would be like off the med.  I did know that it no longer helped my pain but when it was low in my system I felt nervous and craved it.  On the Fent. I was so sleepy that I would fall asleep driving home from PT.  THAT WAS DANGEROUS!  I feel so bless to be free from a med that helped at the beginning but for it to continue to help they had to up dosages every three months.  Rotates to another strong med then back to Fent.  My injury resulted in the SI joint being locked up on the bone ledge above where it should have been.  It took 18 months to discover the problem which the muscles where constantly spasaming trying to put it back in place.  That created disc problems and nerve damage for abdominal organs.  A lot has healed (Thank you Lord) but still deals with more than  I would like.  We all have something wrong or we would not be human.  I look forward to my new body in the next life with no illness and no disease.  But my journey here is not complete or I would have missed out on a few wonderful sisters and brothers like this connection has brought to me.  I had about a week of the RLS and was happy to say goodbye.  Pray you get relief soon!  Big hug lady I am so proud of your courage!

 

Actiquser you are an inspiration!  Thank you so much for your responses!  I read everyone and they mean so much to so many!  Keep up the good work.  Have a blessed day!

You have way too many reasons to keep trying to have s better quality of life. As time goes on we realize we are still blessed even with what we endure. You are strong and have worked through the toughest thing you will probably ever do in your life. I remember days when I wanted to just give up and then found everyone here on this forum. So many are worse off so I am grateful for where I am

2017 will be a great change for many of us. A positive change

Carol

Yes Actiq is a hero for sure. See my response above to you both above. Thank you for your continued encouragement.

Hit reply too fast. Also the compression socks really helped my legs but maybe because I am dealing with an ankle sprain and torn ligaments too. I have actually started to feel normal just dealing with the pain that sent me to fentanyl but it's not so bad in comparison

Stay positive and helping reaching out. I am so very proud of you and sending hugs of healing

Hey Carol - I can't wait for the magic turn around with the RLS. See what I wrote to Actiq - I can't write anymore right this minute because of the fire in my hands. Thank you so much for your encouragement this group has been and always will be very special to me. I hope your ankle is continuing to heal! Hugs!

Ironically my initial back pain is very minor which was what put me on fentanyl. Maybe some of the nerve damage has repaired just don't no or it seems so minor compared to withdrawal. For the headaches also try some sport drinks with electrolytes. I water mine down by half. Keep looking toward day 28 which should be a turning point and then maybe just a few days more. It will come. I got all those little blisters back we talked about. They come and go and always places they are hard to reach. I also found icy hot took my mind off other discomfort. I even tried on my legs when they got RLS. It seems it's all a trial and error. I do have a stim unit that I move to whatever area is jumping. It's uncomfortable but feels great when you turn it off.

Also no hot baths which will really set the RLS off. Just showers and cool the water before you get out. Rub your limbs real good with a towel as that also seems to help for a while after the shower. Keep your room cool and no heavy blankets. I'm still fatigued but that will come with time.

The vitamins seem to take a few days before you notice a difference. I did go get a B12 shot which also gave me a little more energy.

I feel like we should put a book together for everyone suffering. A bible to detox and recovery. I know it feels like it will never end but hold on because for me it literally happened overnight. Then I was afraid to move of fear it would come back. It does but only for a day and nothing like before.

Keep sharing your progress and changes. We all have so many great ideas that work for some.

Carol

Carol, I really hope you're doing ok and having a good holiday season. I've been taking your advice. Things are better, but not consistently. Rough day today. Read the note I wrote to Actiq a couple of days ago for the update but I haven't heard from him and super hopeful he's ok. Kinda concerned as he gets back to people pretty quick. Anyway, let me know how you are.

Melissa

I can't find your post to Actiq so hoping you are having a better day. What is working best for you in term of RLS. I still have a daily struggle but not nearly as bad as the beginning. I got anti anxiety meds which help me sleep but leave me dragging. There is always a counter to anything positive. Frustrating. I did start a workout. It's called 30day beginner shred. Three levels and of course I am on 1. No jumping or impact and I am not using weights. I think I am supposed to do every day but I do theee days on and one off. I have completed six workouts of level one. So this is helping in that I feel good doing something...once it's over ha ha. It's good for making me aware of other pain....muscle which is better than the RLS leg pain. Stretching is always good and toning and building strength should help with other pain. Maybe I'm kidding myself but my body has gone to sh*t over the past few months with the sprained ankle on top of withdrawal.

I still can't take hot baths but I can take a mini bath I hang my legs over the side so they don't get too warm. Also cool shower when done helps prevent the RLS after

Let me know what is working for you. I must say I slacked off the magnesium and coq10 which could attribute to the more irritating legs.

Wishing you continued success at detox. Advise on pain management as soon as possible. Hugs to you. Carol

I wrote a big long response and now it's under review. I hope it posts. I can't do that response again. I wish there was a way to bring it back up and edit where they think it has concerns. Ugh. Hope you are having a better day. I could not find your note to Actiq

Nothing is working for me regarding RLS. I was up all night - didn't sleep at all. Finally slept 2 hours this morning from 8-10am. Not sure how pain management works. I'm calling today to get an appt but that may take a while. I'm just going to see what they do. I'll let you know when I do go. Are you in the US? Just curious. Wonder why your post got nixed. Did they email you why?

Yes I am in US. Delaware. My post said something about being informed on your results but the words got it flagged.

Sorry to hear you had a bad night. I'm so relieved that I only suffer in the evening but not extreme. I'm just squirmy. Taking the coQ10 again with magnesium pill since I think it helps but could just be me wishing. I'll take the placebo effect. I have to get up at 5 for work and last night was pain free so to speak but had horrible insomnia. I got 3 hours sleep.

Do you find that anyone touching your legs makes them even more jumpy and painful? My boyfriend tries to be soothing but I can't stand to be touched when having RLS

Yes, my wife tried the same and I couldn't stand it. She knows not to try to soothe me physically right now. Even my arms.

I jerked so hard earlier I busted the bursa pad in my foot so now I'm in a lot of pain in my foot and still jumpy!

UGH!

Just can't get a break can you. I did something new last night and it dulled the jumpy feeling. I put some icy hot on the bottom of my feet. I don't know if it was the distraction of the gel or what but it calmed my legs. I also put some peppermint spay on my knees. It was a few hours of relief

I might have to try that, but the neuropathy may keep me from using icy hot. Peppermint on my knees sound good though.

Thanks for the tip!