Fentanyl withdrawal is inhumane

Hi

You must remember you have been on a Very Potent Opioid drug and withdrawal, if you have been on it for a while, can take ages to get through.  Get some glycerine suppositories to help your bowels to move. Any pharmacy should have them.  I am glad you are consulting a doctor, but sometimes they forget these little things.

When you have been lying down, sit on the edge of the bed for a couple of minutes to give your BP time to stabilize, especially at night. Turn the light on or a torch, so you will not faint in the dark.

Good luck and hang in, it will get better,

Raphael in the UK 

Thanks for the words of encouragement! Every bit of support helps.

I read your post and was greatful the only thing I was suffering from was severe anxiety and hyper vigilant. Dr. gave me .25 mg Xanax (10 pills). I went from 25 mcg to 12 mcg and had only been on it for 10 months. Well..the 7th day was misery! I shivered, ran fever, increased blood pressure and every muscle in my body hurt. The Xanax helped but barely. Sleep was not an option. Bad diahrrea no apetite. I called my Dr. and he sent me to the emergency room. They gave me clonodine, bentyl, zofran and .50 mg Xanax. I finally slept 12 hours last night. My doctor also has me wearing 2 12 mcg patches...1 for 3 days and 1 for 4 days. I feel normal today!!! The er doctor said this takes 2 weeks. I am on day 8 so I am almost there.

It's very hard to get off fentanyl. For 13 years I was on 2-100 patches every 36 hours I was introduced to fentanyl by a pain Doctor after a 24 day coma, and a battle with MSRA, which was introduced to my blood stream during an operation. I removed my last 25Mcg. Patch 8 days ago. I'm finally free from that 3 day cycle and the monthly refill that has to be hand a delivered prescription. The one thing I can do now is stay away from addicting drugs. I did use cannabis to help with withdrawal symptoms. I feel it helped me very much. I hope this is helpful to you.

Just read your post and was wondering if you remember the doses of the meds that the emergency room doctor prescribed for you to take for the 2 weeks?  Also, how are you handling your pain for which you initially took the Fentanyl?

I have been taking Fentanyl 50mcg every 2 days for approximately 12-14 years with Percocet for break though pain (3/day) and Tramadol EC at night related to 4 failed back surgeries, severe sciatica, and severe degenerative spondylosis C4-5,L3-4, bulging disc at L5-S1.

We will be moving to a country that does not prescribe Fentanyl for anything, therefore I need to detox from it before we move from the US. 

 

Patti,

I don't mean to be intrusive, but I cannot resist the question - which is the country you are moving to that doesn't prescribe Fentanyl for anything??

The situation is crazy. Here in the UK, things are really strict. Fentanyl, even when prescribed by a doctor, is still a "controlled substance". To obtain it from the pharmacy, you need a special prescription, written in exactly the correct legal wording, for example it must state the number of patches to be dispensed, in both numbers and letters, same for the strength (eg: Four (4) patches at One Hundred mcg/hr (100mcg/hr) each), plus more detail, including showing ID every time (bit like buying a can of beer in the US, LOL), the list goes on. Without thi exact wording, the chemist cannot legally, and will not, dispense it.

Yet about 6 years ago, when still on the darn stuff, I was on holiday in a popular, hot European country (I don't think I should name it, just in case it tempts someone to misuse the information. Not likely, I know, but for my consciences' sake) less than two hours flight from London. My last patch came off in the swimming pool. I was petrified. I went to a local equivalent of a GP's office, to seek help. I got an appointment in half an hours' time! I walked in expecting the worst. I tentatively explained my situation (I was already starting to feel ache-y and a bit sick from being without). To my utter amazement, she was jovial, and sympathetic. Without checking ANY credentials, she asked, 'how many patches do you need?' And wrote, in scribbled handwriting, on a sheet of plain white paper from a pad, a script for 6 patches, which was even worded wrongly. The only proof it came from a doctor was that she had an ink blotter with a stamp - hardly difficult to obtain, I would guess..... The local chemist didn't bat an eyelid, and dispensed them to me, no checks, nothing. And they even were the "good quality" Durogesic brand, not some obscure dodgy generic!! Now I NEVER abused or misused the patches when I was on them. But two years later, we went back to the same country (but a different area) and some luggage was stolen from our hotel (a regular occurrence we later learned, in tourist season). I was sure my patches were in one of the bags taken, and thought "oh no here we go again". I repeated the process (different region, different doctor etc) and EXACTLY the same outcome happened. In this case I needn't have worried, since my patches were in another, safer bag with other valuables, after learning about the thieves during holiday season.

?Sorry to ramble - but your post made me curious, given my experiences in Europe....

We will be moving to Panama.  It is not that they don't have it but the ONLY people who they will even consider giving it to are the end of life terminal cancer patients. I was told that by a Pharmacist and from a Dr. also. 

I have already started my weaning process and I am down to 12mcg every 72. My pain management doctor also helps people through their withdrawals. So far so good, still having to use my Percocet 3 times/day. Will be taking the patch off for good tomorrow.

I am going to be getting a spinal cord stimulator inserted shortly.

Hello Patti2576

i must say, it sounds like Panama have got the right idea; do not start people on these patches, unless they have (very sadly) terminal cancer or something else extreme.

if only other docs were similar. So many Dr's in so many countries, are quick to prescribe it, then have nearly no clue about coming off/weanin/reducing.

good work Panama I say, for setting an example!! Do keep posting about your progress!

mark.

Patti my sister got the cord stimulator in 3 months back worked miracles for her like im sure it will for you,all the best

Hi Brian (or anyone reading)...

Does anyone know if you can cut physically down a patch?

I'm on 12mcg at the moment and want to stop but worried about the consequences of having no/little pain relief. I'm also on coproximol (I'm weaning off it though - take usually 5-6tankets a day and gave replaced my eve 2 tablets with paracetamol), robaxin (again I'm reducing these but can take 8 per day), gabapentin (only 300mg now as I'm weaning myself off that too- was on over 2500mg) and sometimes dihydrocodeine on top... I'm just worried if I come straight off fentanyl that I will have much more pain 😕 Thanks x

Hi Deb -

I know of people on here that cut their patches but it depends on the type of patch. Mine was the reservoir type and could not be cut, but there are others that don't have that and I heard of people cutting theirs. So, to answer your question yes, but I don't know the exact details. I am finally able to say I'm pretty much ok after 7 months of hell. I can't believe you're trying to come off so many meds at one time. The last 25mcg of Fent were the most difficult for me hands down. I wish you luck in getting off this stuff. You can do it! Hang in there!

Melissa

Hi Melissa, not sure if the message was meant for me (little miss hope) or Deb? But thank you for your advise. It's a horrendous drug. To be honest tramadol was worse to come off for me cos of all the cold turkey symptoms (only lasted a day and a half though but I thought I was literally dying - I was on 400mg per day of the slow release). But fentanyl I found didn't reduce my pain - only went up to 25mcg but the side effects were horrendous (I was also on all the tramadol and full amounts of coproximol and robaxin, anti inflammatory meds and others too)... I halved my 25mcg patch after about 6months, then been on 12mcg a further 2 and a half years - so nothing in comparison to some on here. I accidentally forgot to change my patch ages ago and experienced insomnia and headaches for about 3 days.... but I went back on it cos it wasn't the right time (I was completing an acupuncture degree at the time)... but now I absolutely have to get off it - we are wanting to have a baby - god knows how I'm going to manage... but got to come off it all as much as poss really. So I'm heading for withdrawal symptoms in about a day or so I reckon 😕 Trying to ignore it.... when I forgot to change my patch for over 3 days last time I didn't really feel cold turkey symptoms- I was just in so much more pain 😕Xx thank you again for your supportive message xx

Yes - sorry about that - I meant it for Deb and will resend it to her. I hope you are right and don't have problems getting off of Fentanyl. If you do, we'll be here. I could not have done it without the support I found here. My doctor didn't help at all except tell me to get off of it. So, I do wish you luck. Take care.

Melissa

Hope -

No I just reread it and it WAS for you!!!! Sheesh! LOL!!! I was on the PAR (manufacturer) patches and had to tape them to wean off as they couldn't be cut. But I think the MYLAN patches can but I don't know anything really about cutting them except people have been successful doing it a little at a time. Good luck!

Thank you Melissa... yeah GPs are a bit clueless sometimes - I guess they can't know everything (as understandingbas my gp is). I didn't have any advise or guidance really, just researched it myself and then reduced gradually. I remember reducing duloxetine and having to break the capsule open and mix reduced minute amounts into jam to wean off it! I wish I'd never been prescribed any meds at all... hindsight ey?! Good luck to you too - and thanks again for your message xx

Hope,

One more thing, if I were you, I'd stay on the Gabapentin until you're off Fent. Nerve pain was one of my worst withdrawal symptom.....just a suggestion.

Thank you 😊 I've read if you cut some patches that they can leak out too quick and you can overdose - that's what I was worried about. But then like you're saying I've read that some patches can be cut and some people have been successful in it. The patches I have in the house are 'Durogesic DTeans Fentanyl' and the 'Matrifen' ones. I don't really know the difference between what they are or how they work - I've read they work like a 'matrix' - but that might mean they need the whole surface area of the patch to work 😕 It's confusing x

Thanks for your advise. I'm not even sure they help my nerve pain though to be honest - I was prescribed pregabalin (then swapped to gabapentin) in 2009 when I was diagnosed with syringomyelia on top of my SCI... it was their automatic suggestion. But then I saw a consultant at the Walton centre following a Pain Management Programme- when he examined me he said that gabapentin wouldn't be helping my nerve pain (in my right leg) anyway. I was on over 2200mg per day a few years ago but reduced it to 300mg (I take just 100mg 3x/day) which is a tiny amount (and I will becstaying on that for a while now anyway). I use auricular acupuncture in my ear which seems to help much more anyway.

But I will bear in mind what you've said about reducing gabapentin at the same time. I think to be honest when I come off the fentanyl I will have to take more of my other meds for a time anyway - I have dihydrocodeine too and anti-inflammatory meds. I just want to be off fentanyl!!

Do you mind me asking... what meds are you on now? What is your injury? It's so difficult isn't it. But encouraging and inspiring to read other people's stories.

Thank you x

Hope -

I have Lupus and Fibromyalgia. I recently saw a pain management dr and explained I was still having withdrawals from the Fent. He couldn't believe how much Ive suffered and my primary dr didn't help. He put me on Cymbalta and within 48 hours my symptoms had deminished significantly! I couldn't believe it. I still have Hydrocodone as well but not having to use it too much. I still occasionally have restless legs, in fact I was up all night and they're still going! But before, I would be up 80+ hours with it. So it is getting better. The Cymbalta also helped with feeling like ants biting me or something crawling on me, as well as anxiety. I've never had anxiety until Fent withdrawal and I hope I never do again! I've only had it twice since being on Cymbalta and I've been in it about 3 weeks. It also stopped the nerve pain I was having. I'm really glad I went and I'm going to be looking for a new primary care dr too. The other meds are supportive meds like Plaquenil, Methotrexate Injections etc. But for pain, it's Cymbalta and Hydrocodone.

Hello LMHope,

Regarding Fentanyl.. Yes you can cut the patches as mentioned as long as they're the Mylar type and NOT the gel filled type.. Those are the ones that can leak out.

I've been on Fentanyl along with 2200mb Gabapentin etc but like you found that the Fentanyl didn't really do anything (100mcg's)

I've been on all the same drugs as you for a real bad back (crushed discs) and a bone tumour in my pelvis which after mjor surgery they can't get rid of 100%. So I'm now on the max allowable doses of Tramadol, Morphone, Celebrex and paracetamol amost other things to reduce their symptoms.

To be honest I didn't actually go through much withdrawl from Fentanyl as the dose of Tramadol doses I was put on mostly covered it. I was however taken off Dihydrocodeine a few years ago and Geeeez, the withdrawls from that lasted a week.. Just like full blown flu with the shakes, no sleep and body temperature swinging all over the show .

I wish you well on your withdrawl efforts and hope the horrible Heebie-jeebies as I call them pass real soon.

Hi Orb, thank you. And sorry to hear about your situation 😓 There's so much sadness in the world- what people have to go through breaks my heart. My injuries and situation stems from when I broke my back in a car accident when I was 16 (1991) - I was the unlucky one wearing a lap belt in the back 😓... I was told I wouldn't walk but miraculously proved everyone wrong - except for pain - meds have increased as you'd expect over the years. Rehabilitation methods probably not so good back then either. But then with syringomyelia, hypersensitivity and fibro on top, things are a bit of a mess to say the least. But I'm still determined to get off my meds... need to desperately x

How do i know if the patches are gel ones or the ones you say? Thank you for your kind words of support x

Hi Melissa, oh my word you have been through it - and still are by the sounds of it 😓 My heart goes out to you and keeping my fingers crossed that cymbalta works out for you... anxiety is awful too - I suffer on and off, together with depression etc. Just awful. Wishing you well and thanks again for your support and advice xx

You'd be much better checking with your chemist on the type of patch you have.. I only know as when I cut one of mine open there was no gel detected inside it. My chemist told me that the ones I was one could be trimmed down as I was asking the same question as you.

I believe though that the gel type are not really available in the UK anymore and most are prescribed the mylar/matrix type where the Fentanyl itself is in the patches material.

Thank you... good idea I will ☺ take care and thanks for your help x

Yes, I totally agree.  In my patches, you could actually see the medicine between 2 clear plastic sleeves.  But Orb is right, it's best to check with your pharmacist.  I'm in the states so things are different here. I'm not at all familiar with your brand of patch.  Take care and keep us updated when you can.

Hello. The Mylar type haveno gel and can be cut. There are various brands. They are literally like Mylar tape. I didn't like those and like many others I went cold turkey from 25mcg. Melissa and I both had some weird withdrawal problems such as little blister sores and severe restless leg syndrome. I've been off since November and still dealing with legs pains but the initial back pain is not as bad as it used to be. I was on fentanyl for 17 years. If you are determined you can do this and we all have ideas to help you over the humps

You can see the gel and it is a clear patch. The Mylar ones are silver or gray here. If it's gel it will have a pocket between the layers that will squish. You'll know

So glad to hear you are finally getting relief. I am still on 3-4 Vicodin a day so maybe cymbalta will work for my legs. I'm taking pain meds more for my legs then my back or ankle. Still hobbling along with that thing. You have really been having a rough time and maybe this is the one that will work for you. So many people are suffering with this drug ...fentanyl

Hi Carol, sorry to hear of your battles but thank you so much for your advice and support. My patch is due to be changed tonight but I'm just going to leave it on and not change it - I'll let it fall off on it's own. It's scary but something I have to do. Thank you so much... x

The ones I have seem flat and not gel but the manufacturers say not to cut them 😕

Hey Carol -

Good to hear from you. Yes Cymbalta has really has helped. I still have leg trouble maybe and hour or two in the evenings but not 24/7. It's helped with pain and also anxiety which has been a blessing. So, you might want to ask if it's something that could help you. Oh, it's also an antidepressant which I need.

I finally feel like I'm over the hump of withdrawals but I'm still a little scared that something may happen. It affects you psychologically like that! I think of you often and hoping your ankle is on its way to healing.

M

Im getting a little better each day. Now working on walking three miles a day on treadmill and trying to get off the ten pounds I gained since I fell. I still don't sleep and it makes me crazy. I'm so tired around six and nod off and then up all night. I'm very irritable at work so maybe I need an anti depressant as well. I also have a lot of weird family issues going on so it's all getting to me. My house partners son and daughter and law just moved in with their dog and this is half my house but I get no say. Sorry I'm venting. I'm going to ask about cymbalta and I am so very happy for you that you are making progress. It's going to take a long time for our brains to make that dopamine again but it will get better. Sending you a big hug

3 miles - that's great! The progress, even though things are getting better, is still tenuous and let's me know who's in charge once in a while. I've been awake since Wednesday morning UGH! I'm in more pain today than I've had in a long while. I'm praying I'm not going into a Lupus flare because that's sort of what this feels like. My legs jumped all night last night so I'm hoping the pain is just from that. Anyway - really glad to hear from you! Stay in touch!

Oh no and you were finally getting a break. This sucks. I know what you mean when you have a good day but live fearing how soon it will end. I finally gave in a few days ago and cut up the last two boxes of patches. I needed the security of knowing I had them.

It's a crappy morning and my legs feel like they have mid flowing through them. Once the Vicodin and coffee kicks in I'll try for my three mile walk and begin the day. No plans. Too anxious. This is a daily new problem. Super anxiety for no known reason. I want to snap at everyone.

Wishing you a pain free day for at least today so you have a chance to regroup for the next round. Take care

Just checking to see how you are doing now that the patch is off. After theee days it is not effective so you should be over the initial withdrawal. Just checking to see how you are making out. I don't remember how long you were on these thing

Hi Carol, thank you so much for your message. Means a lot that you've thought of me. I am managing thank you - had a few sweats yesterday but think that was more to do with the fact I'd forgotten to take my other medication before leaving the house! Oops! Not good timing! I saw my gp yesterday morning too (it was on the way to him I realised I'd forgotten my meds - I took them whilst at the app - quite funny really). Anyway he said I should just top up my meds with dihydrocodeine and full doses of my coproximol and robaxin - that way I have more opiate to deal with the additional pain. Hopefully only temporary. I am also seeing my pain consultant mid march too. I'm in more pain at the moment - feel I need oiling! It's in my hips, lower back and glutes- kind of like a sciatica type pain. I've been on fentanyl for about 3-4 yrs- initially 25mcg but then I went down to 12mcg after about a year. I was also on massive doses of tramadol and gabapentin, and last year was on oramorph too... considering I've been on all that but now I'm just on mainly coproximol and robaxin with a tiny bit of gabapentin and dihydrocodeine I'm really pleased- I just hope I can maintain it and not lapse and put another patch on.

How are you anyway? Are you managing?

It's so lovely of you to message - thank you x

I know that comfort is number one goal. It seems you are on so many meds I am not surprised you have sweats. I'm just finishing menopause so sweats are a daily annoyance for me. I only want to say that if there are any drugs you can cut out I would do it. The benefit of fentanyl for me was I did not have the roller coaster high and low like pills but then after long term use I had awful legs issues. Restless painful flu like symptoms. I have come to the conclusion I will always live with pain but as long as it's bearable I'm fine with that. I just want you to be sure you are not hurting your organs long term and on the minimal amount needed to have pain management. This forum is very helpful. Many of us are happy to share our knowledge and experience. Best to you

Thank you so much again Carol. I have been on meds a very long time - since 1991 when I broke my back. I was put on alsorts at that time, but then settled on just coproximol, robaxin and ibuprofen. I wasn't aware then of the harm to my organs at all and doctors just prescribed. I recently trained as a TCM Acupuncturist and have learnt the dangers of medications and the benefits of complementary treatments (and exercise!) but I just wish I'd known sooner... anyway, I will reduce what I can for now. I just thought Fentanyl would fe the bestbto get off first then I can wean off the tablets in lesser doses. Been in a lot more pain today though and struggled walking. I can't walk far anyway but today I struggled so much more. Time will tell I guess 😁

You have made milestones. Be proud. I wish there was a miracle for you. I know how hard it's been and how you struggle. I love you ambition and positive attitude. My next step is meditation and yoga. I'm laughing because I don't think it will help but my mind needs a break from life. Just keep trying to find pleasure in each day. Love to you

Hi Carol, thank you again - you're always so supportive 😊. You're right, some days I've felt like giving up, but then somehow find the strength to pick myself up. Pain is so unfair. And as for meditation and yoga - they will most definitely help you. I'm supposed to meditate (recommended through the pain management program I went on, and also through the acupuncture degree I did). It's just hard to keep it up. Another thing you might look into/try is Mindfulness and also Qi Gong (and even acupuncture). I am doing Pilates at the moment just one-to-one to try to strengthen my core. It's so difficult though. I wish you lots of luck with your yoga and meditation. Take care.

Ps I woke up feeling like death this morn 😓Everywhere aches like hell... gonna try to resist putting the patch back on though... x

I'm having one of those painful want to jump out of my skin days with aches all over and painful pins and needles in my feet. Guess that hike yesterday was a bad idea even though I wore a brace. So I'm starting with a Percocet and coffee then onto some icing of my legs. Then magnesium that is supposed to help with a rubdown of peppermint and eucalyptus spray on all effected areas. I know you probably need to just bath in the stuff. Hopefully all of that will either give me relieve or distract. Then I move onto some stretching and kick my but out the door to go enjoy a day off work. It's a mind game for me every day. Keep being positive and take the pain pills provided to get moving. I'm still detoxing and suffering from the withdrawal after 4 months. It do s get easier from week to week but there are bad days when we have rain storms or extreme cold. Hope there is a remedy in there for you to get relief. Carol

Hey Hope - (and Carol)

Are you having any withdrawal symptoms yet (other than pain)? Any upset stomach, restless legs or leg cramps, sweats or anxiety? I've been thinking about you since you said you weren't going to put a new patch on. I'm hoping you'll be ok because of the other meds you are on.

I've been following you and Carol and I'm soooo thankful for the support found here. I have a follow up with pain mgmnt Dr tomorrow. The Cymbalta has helped quite a bit and I'm very grateful for that. But I'm still having leg issues. I was awake from Wed am til Fri night, and I jerked so hard that Fri am I could barely move because my back hurt so bad. So I'm having severe back pain and lower extremity pain. Hydrocodone helps a little but I just need for the RLS to subside somehow. On the positive side, I've only had maybe 3-4 instances of anxiety with the "creepy crawly's." I was having them everyday so I'm happy about that.

I have confidence that you're able to get through this. I'm honestly thinking that because of your other meds you'll be ok. Oh - I have a question. Is your dr pushing you to get off the patch or is it a personal decision? I'm just curious because mine was mandated because he's not prescribing pain meds anymore to anyone.

Just wanted you and Carol to know I'm thinking of ya'll and following your thread.

Virtual hugs to you both.

Melissa

Carol - I'm 7 months and one week off the patch. I don't know how you're doing everything you are! See the note I sent to Hope and you. The Cymbalta is helping with the skin crawling and especially the nerve pins and needles. The nerve pain is gone! The anxiety and skin crawling - in 4 weeks on Cymbalta I've only had it 3-4 times. The big thing is my RLS. It's still an issue. Now, it IS better - but - it's still every night. Usually only a couple of hours but I was up for 60+ hours this past Wed, Thurs & Fri. I'll take a couple of hours because I can still get some rest. But also, sleep is highly interrupted. I'm awake off and on all night.

I admire you for doing all the physical things that you are doing.

I'm not there yet. I did attend a Mardi Gra Pet Parade and lunch with friends yesterday. I was thankful for that. But hiking or walking 3 miles? No way! Keep it going!!!

Virtual hugs!!!

Melissa

I'm having mostly restless leg pain and lots of anxiety lately. Thinking maybe I need to be back on Zoloft but it could be due to my thyroid. Ran out of meds about aknth ago and didn't want to refill until I got my new blood work results. I'll call dr tomorrow to get that refilled

Aside from the two items above the back pain has been minimal. Most of my problem is my leg

Pains and that is aside from the ankle

Thanks so much Melissa. I could not do all this without the supposed and knowing although there is pain it's not going to hurt me and eventually the core strength should help my back. Also as much exercise as possible makes it easier to sleep even though it sucks it's better than none. It's catch twenty two. You need to move to get stronger but then you hurt from moving and need more meds. I figure eventually the exercize pain will go away and I'll be stronger and have a better quality of life. One thing that really sets off my RLS is sitting. It's a fact so don't sit still for more than 15 minutes and then go get a drink or do a load of wash or dust a table. I never sit still. Watching a movie means a guarantee for RLS. I use ice often on different part of my legs. I don't have as many other medical issues as others. I have nerve damage in my back and the stage 3 sprain and typical herniated discs bulging discs and some other stuff just being older. I also use heat or ice on my back for pain but it is not nearly as bad asa the leg pains.

I'm really trying to have a positive attitude and work toward a healthy lifestyle

Carol,

I saw the pain management dr yesterday and over the next 2 weeks he's going to put 8 injections in my back. 4 at a time. He's hoping it will give me some relief. I was supposed to see the Rheumatologist today but I've been up since Sunday w RLS and in no shape to drive 5 hrs round trip. My wife will take me in a couple of weeks. I'm glad you're able to do some exercise. These last several days I've been in more pain than I have since coming off the patch. THEN I had a bit of anxiety last night - possibly from so much pain?

I'll write more when I'm up to it. Take care of yourself! Hugs!

Melissa

I had spinal injections years ago and they didn't work but I have different issues and didn't follow up. Also I don't think I had four so this might be the trick for you. Ironic you talked about pain sleeplessness and anxiety. It hit me hard these past few days so I decided to go back on anti depressants and anti anxiety meds. Yesterday I just cried and took double my normal pain meds. I was up until three and jad to get up at 5 for work. I hope we are just suffering from some spring fever. I have had really bad RLS for the past 4 days or so. I thought things were calming down and then it hits again. Today I started with non stop sneezing. I mean literally 200 times a day so it gave me a headache and I constantly feel like I am going to sneeze again. I read someone else had that issue when they went off fentobit or appeared early. This is so weird

I'll be praying those shot are you miracle. You are due one and I'm sure your wife would like to have her partner back sleeping in the bed. I hate the lonely painful nights. They are the worst.

Guess we just have to keep doing trial and error. Still have not contacted a pain management counselor. I'm afraid they will take away the meds I do get and I need them. One day. Thanks for keeping me posted and sending back healing hugs

The sneezing went on for the first few months and I thought it would never end.  Now it's just occasional.  Are you completely off patch now?  I think you went off before I did.  Yes, this RLS is making me crazy.  Every time I start to fall asleep I start kicking!!!  The pain management doctor is the most kind, caring and compassionate Dr I've seen in a very long time.  He is so sweet.  Just a really nice guy.  He said that the injections are not epidurals.  These are "facet" injections.  I asked him if they normally help with RLS and he said not usually BUT - he's hoping it will in my case.  He's injecting in 4 different places in my back, one on each side of the vertebrae that are involved.   Then I go back a week later for the same thing.

I am in the worse pain I've been in since stopping the patch.  I'm really praying that I'm not going into a Lupus flare.  I don't think I am.  I think it's just from my legs kicking all night and the legs, hips and back pains are caused by that. 

Stay in touch.  I really hope Actiq is okay.  He's got a lot going on but I miss hearing from him.  Hang in there!

Peace & Hugs!

Mel

Hi Melissa (and Carol),

Thank you so much for your message. Sorry it's taken ages to reply - been meaning to but got distracted.

I'm overcome by the support I've received from you and Carol - it's so nice that people care enough to message and see how I'm doing. It means a great deal 😊

I've been reading posts and hadn't really ever had RLS before - or at least nothing I'd call "RLS" previously. I have always suffered a nervy kind of pain permanently in my right ankle/foot from my accident in 1991 but over the years this got progressively worse. It now extends up the side of my right leg (and front) too but mainly just to my knee. Over the last few years I've struggled with footwear - thinking it was plantar fasciitis- but my neurology Physio said it was neurological. I've been managing the pain but still struggling. But since getting off fentanyl (I've kept the patch off completely (yeayy)) I've been getting a burning sensation in the bottom of my feet and also my nerve pain has flared up some nights significantly and has stopped me sleeping. I have had to up my dose of gabapentin on the night - I'm still trying not to take too much though - I take 500mg in total each day (200-300mg at night). My pain was sometimes 'jerky' before but reading your posts I think it may actually be RLS???

I've not suffered sweats - only 36hrs after I didn't change my patch - but I think that was only due to my having forgotten to take my other meds too. I've not suffered headaches either - presumably cos of my other meds. I started by increasing the dose of other meds and then added dihydrocodeine- but now I rarely take dihydrocodeine and have started to reduce the odd one or 2 tablets throughout the day too.

My doctor didn't know I was coming off fentanyl at all - in fact I think he'd rather I'd come off coproximol (as it's no longer licenced and that's what we talked about me starting to reduce - which is still the case now, and replacing with paracetamol. I took the decision myself to come off it as it was the last medication I was given 3-4yrs ago (when I stopped walking again) and although I was on 25mcg initially, reducing to 12mcg about a year later - again doctor didn't realise I was halving the dose. I just couldn't stand the thought I was taking it and didn't want to depend on it when I never used to have to take morphine.

There is also another reason for me wanting to reduce my meds and come off what I don't need - I want to have a baby. For the past year and a half we didn't think we could try cos of my meds and the syringomyelia I have - we entered the horrible world of surrogacy. I've been through 3 ivfs, abused by an agency and 2 surrogates and had money stolen... we just can't take any more. So although it's not ideal if I fall pregnant due to my spinal injury and meds, I think we have a better chance if I'm on safer meds - I am waiting to see a specialist dr over that side of things too. None of this is ideal though - and we are probably clutching at straws now anyway hoping for a miracle as I'm 42 this month... so here's hoping for future miracles for us all, esp on the pain front!

How are you doing Melissa?

X

Hi Carol,

How are you feeling?

Sorry I've been off the radar a bit... trying to adjust I guess.

Where do you live? It's just I wouldn't have thought pain meds would just be taken off you for seeking pain counselling. Pain is so hard to deal with! That would be unbelievably unfair.

I've been on a pain management programme a couple of years ago - at the Walton Centre in Liverpool. And from reading your posts, you're doing everything you can be doing - exercise is key (which I'm guilty of not doing on a daily basis, but I try), and pacing with everything... planning goals/tasks no matter how small and thinking about breaks, rest, stretches before, during and after... breaking things down into doable amounts... meditation/mindfulness, and understanding that what you're experiencing is normal for your injury/illness/condition - a lot of people for example think they're going mad or starting dementia, but in actual fact forgetfulness and other symptoms are all quite common with certain types of meds.

The hospital has a website for info on pain management - but I think you'd see you're doing just things already probably without realising it.

I do think the only difference though about being in the programme is meeting others in the same boat (even from different injuries etc) - it makes you feel normal and accepted and reassured xx

Hi, I've had facet joint injections - they were injected using an X-ray machine too - sadly they didn't work for me - in fact I was worse for about 3 moths afterwards. But every condition is different and I guess they wouldn't suggest them unless they worked in the majority of cases. I really hope it works for you.

Another type of injection to consider might be steroid injections. They helped a bit when I was really bad (when I stopped walking 3-4years ago). My spinal consultant did those.

Did you mention sneezing in one of your messages?? It's just I've been overly sneezing for the last 4-5 days which is really odd for me. The other thing I've noticed since stopping fentanyl is that I don't appear to be as sensitive to our 7mth old semi-long haired kittens!! The are ragdoll/Tiffany cross so have wispy hair which used to irritate my eyes. But now that's gone. I thought the slight 'allergy' I had to them had changed to sneezing! But when reading your 'sneezing' posts I'm thinking it might be more to do with my fentanyl!!

And as for my nervy leg pain / RLS (god knows what it is) - why is it it only happens at night??! I get so frustrated with it. It hurts like hell and sometimes I've had to take a diazepam and top up my other meds just to knock myself out to sleep! I was up the other morning until 7.30am awake in bed. I felt so sorry for my other half who needed sleep as he had to leave for work at 7.30am - he got no sleep at all. I've not known pain like it - so annoying that nothing works!! Any ideas how to manage it without increasing my dose of gabapentin further? Thanks xx

Yes - I sneezed for MONTHS!! It was terrible. Even now I still sneeze more than I used to. Also, yes if your legs are jerking you've got RLS and it is painful, especially if the nerve pain has kicked in. What I figured out is that after being on the Fent, my nerves were waking up after being suppressed for so long. So again, the nerve pain was only solved with Cymbalta added last month. Oh, my RLS doesn't happen just at night. It goes 24/7 but it's worse at night.

The pain Dr is using steroids in the facet injections so we'll see how it goes. I really hope it helps. He'll do it under fluoroscope at his office.

I feel for you. Just hang in there - if I can do it so can you.

Hope you are definitely on the right track. Yiur chances of pregnancy are much greater with less drugs for sure and I'm 56 and just now went through menopause. 42 is not too old these days at all. Your mission now is to get as healthy as possible. You can do this.

Remember that although you will have more pain as you lessen your drugs it will be bearable if it's for a purpose and it's not harmful to yiur well being. What I mean is there are meds you need so you are mentally ok. I have been on a mission to find alternative medicine such as water therapy Togo stretching even if sitting on a chair. Acupressure cold compresses hot baths peppermint sprays icy hot and sometimes all of them at once.

Because of my ankle injury on Oct I have that same foot burning. I know it will be at least 8 months before that is better. I also wake with internal ankle bone and leg pain but move around and get back to sleep. I keep a chilled gel compress next to the bed and a heating pad. O grab whatever I need at the moment.

Positive thinking girl and work toward good diet and all the moving you can do. Did I understand you are no longer walking? Are you walking now?

Also sorRy to say but that jerking is a form of RLS. Welcome to our group. Hoojg ots not jump out of your skin painful. Pay attention to what sets it off. Hot baths can feel good but set off RLS as well as heating blankets or heavy bedding

I'm praying for some good news soon. You CAN do this. Relax too as stress is not helpful. Sending you lots of fertile thoughts. Carol

RLS is nasty and happens at nigh because it's when you rest. As your muscles relax the tendons start to shorten and create a jumpy feeling. See my other posts about avoiding hot baths or shower. Do stretching and massage your legs. Peppermint spray help cool the skin or maybe just distracts me. Cools towels on your legs.

We all know it's freaking painful. I try not to sit too long and will kneel on the floor and lay accross the ottoman for relief to watch tv. I constantly crack my knees At night we relax and sit to watch tv and that resting is the RLS. Search the net and let me know if you come across other suggestions

Others have reported the sneezing. It didn't happen right away. It was a few months later and hot for days and days sneezing like 200 times a day. At my age 3 sneezes and o pee my pants

Hope some of this is helpful and lets you know we are or have been there. Best. Carol

Those injections are going to work for you. I just know it. You are making progress and this will be the big winner for you. You deserve the relief for sure

Thank you Carol.  I have faith that they will.  I told my wife today that I think the lower half of my body is starting to give out because I've been doing this for so long, but I really think the injections will help.  I'm counting on it!  Thank you for the encouragement!

BIG HUGS!