Melissa5000: nerve/muscle pain/burning after fast taper

[Melissa5000]

Now that I am 4 weeks post surgery most of the pain has gone. I can cycle again! And I can do most chores around the house. But I can't do heavy lifting or heavier cores like vacuuming and lawn mowing, pruning and so on. I can walk over 3 km now at a speed of 5 km/hour. I have had lots of improvements! I hope to be back at the level I had before the surgery in 2 weeks. I still have a little extra nerverpain since the surgery. Lets see what happens. 

 

Edited June 25, 2019 by ChessieCat
reduced font

[Melissa5000]

At the moment I am finally a little bit better after the crash a year ago. I did an updose and my withdrawal symptoms are finally calming down partially.

But in a few weeks I have to step over to another med for the amitriptyline as I am allergic to the generic. My last supply of brand amitriptyline is almost up. I have to step over to nortrilen slowly. And it is only 2.1 mg amitriptyline what is left.......but I am very sensitive, so I dread the future..... I fear I will be back in hell soon. 

 

And then there is so much lyrica left to taper! I am tapering since 2016....... I wish I could get off these meds slowly without crashing again. 

 

Next week I have to talk to my painspecialist in the hospital about the change from amitriptyline to nortrilen. I am so nervous!

 

Any advice?

[Altostrata]

On 6/24/2019 at 9:42 AM, Melissa5000 said:

But in a few weeks I have to step over to another med for the amitriptyline as I am allergic to the generic.

 

Can you not get a different brand of amitriptyline? What are your allergic symptoms? When did they start?

 

If you can't stay on amitriptyline, I hope the switch to nortriptyline goes well for you.

[Melissa5000]

Hi Altostrata, thank you for answering! 

In the Netherlands we had as Brand amitriptyline Triptyzol and Sarotex retard. Both brands are off the market. I seem to be allergic to several generics I tried. 

 

Are there other brand named Amitriptylines still on the market? What brand names could I ask for? My painspecialist had no other brands in his computer to pick from. Only generics. But I would like to know more brand names I could ask for. 

[ChessieCat]

From https://www.drugs.com/international/amitriptyline.html:

 

Amitriptyline BB
Brown & Burk, Netherlands

 

Amitriptyline HCl Apotex
Apotex Nederland, Netherlands

 

Amitriptyline HCl Aurobindo
Aurobindo, Netherlands

 

Amitriptyline HCl CF
Centrafarm, Netherlands

 

Amitriptyline HCl Mylan
Mylan, Netherlands

 

Amitriptyline HCl Sandoz
Sandoz, Netherlands

 

Amitriptyline HCl Teva
Teva Nederland, Netherlands

 

Amitriptyline PhP
Pharmaplant Ltd., Netherlands

[Melissa5000]

Thank you Chessiecat! Those are generics. I tried several from the list and a few more.

 

Meanwhile I phoned the Pharmacy again. The lady on the phone said that there was no brand Amitriptyline available anymore in this country. That is the usual message I get.

But this time the lady switched the phone to the pharmacist. I asked about Elavil from abroad. He started thinking and searched in his computer. Het said he found Saroten Retard capsules available somwhere abroad. I googled it. It seems that they are from Lundbeck, the exact same factory I had the Sarotex retard capsules from!

 

He might be able to order them for me if I pay for them myself. Yes I would love to do that!  He said I need a new prescription for them from my doctor. I will ask my painspecialist in the hospital on next monday for a prescription! Maybe everything will be all right! 

 

I am shaking now! I really hope that this will work. It would really save me! 

[Melissa5000]

The pharmacist is not sure if he will manage to order the Saroten Retard. There are strickt rules for medicine from abroad. Maybe he cannot get them. 

 

I am soooooooo nervous now!

[Melissa5000]

Since wednesday I am replacing 0,1 mg Sarotex for 0,1 mg Nortrilen. Till now it goes not so bad. Only some nervepain in my feet. 

But I have my period now and I had been on my feet for hours. First while cleaning and later while fitting swimwear. I ordered many swimsuits online and I had a hard time choosing. So I changed outfits all the time and have been standing in front of the mirror for a long time. I finally chose 2 swimsuits and 2 tankinis.  I want to go to the beach this weekend. 

 

I really hope that the switch from Sarotex to Nortrilen goes well. When I stopped 25 mg Sarotex in september 2017 and when I tapered 1 bead Sarotex in januari this year I got hit on the 5th day. BUT then I did not replace it fore something else. 

I hope that this time I won't get hit as hard as when I just tapered. 

 

I feel like a guinea pig again. I have to wait and see what will happen. At least I will know on monday when I see my pain specialist  so I can ask for advice in the hospital. 

 

 

[Melissa5000]

Today I did a lot of laundry and cleaning. I have 8000 steps on my sportswatch. 

 

Tonight my boyfriend will visit me. I am looking forward to it! 

 

Today it is day 4 of the switch of 0,1 mg Sarotex to Nortrilen. Mostly I am quite fine till day 4. 

I usually get hit on day 5 when I taper Sarotex. So I am very concerned that tomorrow my life is over and I am back in hell again. I fear that I will break out in nervepain all over. I fear that tomorrow I can hardly walk and use my hands and arms. I fear burning feet and toes and legs. I fear I'll be an emotional wreck!

 

It is so hard to imagine because today everything seems fine. Only a little nervepain here and there. But not too much. 

But in januari it went exactly like this! So I feel this is my last nice evening before I might be for years back in the nervepain hell. 

I hope so much that it won't be that bad this time because I replaced it for Nortrilen....................

 

 

 

 

 

 

[Softcell]

Hi melissa.   Currently in heavy withdrawals for the past 8 months. I've been reading all through your posts,  feel like I know you now.  Anyway wishing you all the best and hope all goes well for you.  

[Melissa5000]

Hi softcell, thank you so much for your support!

 

You are having a very hard time as well. I wish you all the best!

 

Sunday my boyfriend and I went to the beach. We had a good time! I had more nervepain all over so my boyfriend had to help me in the garden.

I still managed to walk a bit, but my speed was slower.

 

Monday We went to the hospital. My painspecialist suggested to drop Sarotex by only 0,05 mg. 0,1 mg is too much for me. 

He sent a prescription to the pharmacy for Saroten Retard. Later the pharmacist asked for an extra form to be signed by a doctor. He sent that form as well. 

Now I have to wait and see if my pharmacist manages to order the Saroten Retard or not. I have the impression that it will succeed, but I am still nervous and unsure about it.

 

After that my boyfriend and I walked a lot in the city to visit a few shops and the city Hall. I was surprised I could still walk quite a bit. But The speed is a lot slower.

 

Today I went to the gym again for the first time since the surgery. My arms hurt from steering the ebike. Typing also hurts. I managed to walk 3 km at a speed of 4 km/hour. That is a lot worse than just before I switched 0,1 mg sarotex for 0,1 mg Nortrilen.

My arms hurt all day badly. I decided to switch 0,05 mg Nortrilen back to Sarotex.  0,1 mg is too fast for me. 

 

 

 

 

 

 

 

[Melissa5000]

Last weekend I managed to travel by train and busses to my boyfriend his place! It has been since early november since I was there for the last time. 

He always travels to my place. He has a car. We spent some nice time together and we made a walk in the forest and hills. 

I just got home this evening.

 

My pharmacist ordered the Saroten Retard from Switzerland! I can get them at the end of this month. It takes a few weeks to get them delivered. 

 

The surgery is six weeks ago now. But I still get pain in the chestmuscles if I do heavier things or if I clean a bit longer. So I still have to avoid all the heavier chores and cycling over 3 km away from home. I hope my breasts and chestmuscles recover soon. 

[Melissa5000]

Today the Pharmacist phoned me. He could not get the Saroten Retard as they are off the market. He will order another brand amitriptyline. Tablets. 

I am dissappointed! But maybe this brand does not cause UVA allergy.

 

I don't know how I can ever get off lyrica and amitriptyline. The smallest amount I taper causes big trouble. I am still on so much lyrica. How can I get it down to zero if a tiny amount destabilises me as if I tapered 25 mg in one day!

 

A quick taper looks attractive. But I am very sure I cannot take care of myself then. I wil probably lay in bed in great pain for the next 5 or 10 years, I feel my life is destroyed. A microtaper goes too fast. I can hardly take care of myself after a very small drop. I can hardly walk or use my hands.That is only after one mini drop. What if I would do a second mini drop? I would need a wheelchair. How can I do a micro taper and live a life at the same time? I don't know and am very desperate. I have 2 meds to taper. 

[Melissa5000]

I have stopped the Nortrilen and switched back to 9 beads amitriptyline. The Nortrilen did not help much for withdrawal.

 

Last week on monday I decided to try a tiny drop in the lyrica. I only tapered 0,5 mg. Monday evening and thuesday I felt awful! Like I had the flue with musclepain and random nervepain all over. From wednesday to sunday I started to improve a bit. 

 

I know I have to get rid of these meds. So I decided to drop today again 0,5 mg lyrica and 0,01!!!!!!! mg amitriptyline........

These drops are sooooooo small! But I really feel the effect. I hope I can do a few drops in a row. I am not sure how it will develop. 

 

My chestmuscles recovered a bit more. It is now 8 weeks ago since I had my breast implants removed. I had no problems yet but I am so relieved they are out! I am happy that they can't affect my health anymore. I am very surprised they still look quite nice. Having smaller breasts is very handy with movement and cleaning and laying on my side I discovered. I don't feel the weight of the implants anymore. 

 

Yesterday I was able to work in the garden again! I managed lawn mowing and cutting the edges of the grass and removing weed! A big improvement and the first time since the surgery I was able to do all this work. 

[Melissa5000]

Yesterday I went on my ebike for groceries. I went twice for a small walk.  I walked 3,5 km in total. And I had been cleaning indoors. I had 11717 steps on my sportswatch! My sleep was good.

 

Last night I only slept 6 hours because I kept reading in bed till I finished my ebook on my phone.  😁 So today I am a little tired The weather is hot today. 30 degrees celcius. I am taking it very easy today. I sit inside the house where it is not too hot yet. I drink lots of water now. 

 

 

[Melissa5000]

The weather is still hot over here. It was yesterday 35 degrees C and today 36 degrees C.

Yesterday evening I managed to walk 2,5 km. It was a bit cooler after 21.00. Today I cycled in the evening to a supermarket. But it was still hot.

I take it easy and spend most of the days inside. I read a lot. I feel withdrawal symptoms. I have a bit more nervepain, some face ache again , some pains in the spine but till now I can manage it.

 

[Melissa5000]

I had a very nice weekend with my boyfriend. 

Yesterday I mowed the lawn. It went fine. When I did some hamering I noticed a storm of nervepain in my arms. It stayed there for hours. 

 

Today the weather is cooler. I did the laundry and I am tydying up in the attic. I have too much stuff. I am selecting items that I can give away to charity. 

Today My arms start to hurt when I use them. I feel the storm of nervepain again.

 

I am closely monitoring to see how my withdrawals devellop. I noticed my mood went down because of the pain and I had cryingspells over nothing. I forget things too.  If it does not improve a bit by the end of this week I need to hold. 

 

The moodswings I can manage. I tell myself it is just withdrawal and that everything is ok. That really helps. 

 

[Melissa5000]

Today I cycled into town on my ebike. I went to 3 stores. 

Today I feel mentally much better than yesterday. But my arms still hurt quite a bit. I felt pain when I had to cary 2 big bags out of the store to my ebike. 

While shopping I had a few aches and pains in my arms. And also sometimes while steering. I notice I cant use my arms too much. I need to take it easy. It is withdrawal time again. 

 

[Melissa5000]

Today I cycled to the hairdresser. I have my hair at shoulderlength now. It looks a lot better. I suffer from hairloss. Every half year my hair is thinner and needs to be cut shorter again. The hairdresser mentioned that medication like Lyrica can cause hairloss. 

In the morning I felt like crying but I stopped that by telling myself it doesn't make the situation any better. I was ruminating about the moment that Lyrica goes off the market. I get sunallergy from the generic and then I need to stay inside all day till it gets dark. 

I cannot taper quicker. I will need to hold now as my symptoms get bad again. My arms hurt and my left shoulder hurts because I lifted a shopping bag for just 30 seconds. My hands are so sensitive again.

 

I desperately want to get off the meds. But at this speed it would take me 20 years! That scares me so much. Is there any hope for me that it can be done quicker? What can I do to speed the proces up without disabling myself too much?

 

It scares me that my symptoms flare up so much after just a few tiny drops. Is this normal?

 

 

[Melissa5000]

I had to updose. I am on 9 beads and 124 mg lyrica now. 1 mg lyrica is tapered. But I have many symptoms and lots of nervepain. I fell back so much. 

 

I am spending time with my boyfriend and family.  But I am not strong enough for the gym. 

 

A birthdayparty was nice but I got many symptoms when I came home. And a small walk caused a ton of symptoms. I hardly managed to get home. I have to behave like an 80 year old to prevent symptoms. I need to take it easy. 

 

Why does it seem impossible to taper? I don't understand. Everybody on this site is tapering. I am stuck and feel to be the only one. What can I do to get off these meds without killing myself or become bedridden and be crying all day with a burning body laying in bed for years.

 

I would love to get some advice now.

 

I feel totally dissappointed and sad. 

 

I don't know what to do now. 

[Melissa5000]

Thursday I went to the gym. It was very hard to get there on my ebike. pain in my arms.

 

Now I am completely back to where I started. I practised small walks of 1400/1500 meter around my house.

 

In the gym I managed to walk 2 km at 4km/hour. I was extremely tired and had to sit down. I managed to get dressed and cycle home.

 

Friday I spent an hour gardening and I hoovered 15 minutes with the swivel sweeper max ( a very light device with rolling electric brushes under it). 

 

Today I managed to cycle 5 km on my hometrainer in 21 minutes. Very slowly. I have musclepain in my legs now. 

 

I am trying to train myself fitter again but it is very hard. What a big price to drop 1 mg in lyrica..............

[Melissa5000]

Last night I did not get enough sleep. Today I suffer a lot more.

 

I suffer more pain, weakness and anxiety. I try to stay as calm as possible. No exercise today. A bummer!!!

[Melissa5000]

Last night I slept 6 hours. not much. So I cannot do as much as I want. But I managed to clean the bathroom and do some laundry. I am gratefull for that.

 

Yesterday I managed to go grocerieshopping on my ebike after 7 hours sleep. My ebike has 9 levels. Level 1 is the weakest and level 9 the most powerfull. I usually cycle in level 5 of electrical support.

Yesterday I cycled up and down to the supermarket in level 3!  It is around 5 km back and forth. 

 

Today I have to take it easy because of the lack of sleep and the nervepain.

 

 

[Melissa5000]

Last night I slept 6 hours deep. I woke up. After it I had 2 hours of light dreaming.

 

I cycled on my ebike to the pharmacy in level 3. It is 6 km back and forth. 

 

And I managed to mow the lawn! 

 

I try to stay a bit active at a modest intensity. 

 

 

[Melissa5000]

I had a few nice days with my boyfriend, we went swimming in the lake. Because of the nervepain I could hardly swim. We enjoyed the sunny weather. We sat in the garden and we have been gardening. I can mow the lawn but cannot do weeding. Crouching and pulling the weed is too painfull. My boyfriend helps me. 

 

My sleep was better but my period triggers more symptoms and nervepain. 

[Melissa5000]

After I had been decluttering and lifting many clothes and bringing stuff upstairs  for 3 days I had a setback. I had an injured thumb, hand and arm. (Not a real injury, withdrawal just made it feel like that!). And I could not sleep for a few nights. I was in a lot of nervepain all over, very forgetfull, problems with cognitive functions. I could barely walk.

 

The only good thing was that this time I stayed mentally calm and positive!

 

My boyfriend helped me a lot. We had a nice long weekend. 

 

Last night I slept 8 hours and I recovered partially. Today I felt better.

 

I hope that I can sleep again this night. 

[Melissa5000]

My sleep goes up and down. I have lots of nervepain again. I have to take it easy every day and can't do all the chores I need to.

 

It is a bit boring. Only 1 mg lyrica caused this!

 

I am as much as possible on the phone. I am reading a lot. I'll do as much as possible, to have a nice and usefull time. 

[ShiningLight]

M5000, hello there! I am tapering gabapentin which is very similar. It causes pain related issues for me in tapering it. I was on it for anxiety, not pain. But I have pain during withdrawal. Among other symptoms, I get neuropathic pain in my hands and on my left cheek. I've also had that pain in my stomach and on the roof of my mouth. Feels like someone is pouring acid on me. I also get dull pain in my joints. Thankfully the pain doesn't last long; it comes and goes throughout the day and is worse after a dose reduction. Would encourage you to take it very slow with the lyrica! This stuff is no joke. 😕

[Melissa5000]

Thanks for stopping by ShiningLight! I appreciate that! 

 

My last reduction was from 125 mg lyrica to 124 mg lyrica. Before that I was holding for a year. I was going very slowly. Too slow I fear to get off before I am dead. 

 

I am holding now after a small updose. No joke! Turtle speed over here!

 

But I see you tapered from 1800 mg gabapentine to 320 mg in a year! That is very fast! 

 

I wish I could go that fast!

 

I recognise all your symptoms. It sounds very familiar.  I had only face ache before. Now I have burning pains all over from withdrawal. 

 

I really hope I will stabilize soon.

 

I managed to mow the lawn, to prune the ivy, cook and wash dishes. Now my arms hurt a lot and I have to rest. 

It was for me quite a good day compared to how I was the rest of the week. Not a really good day of course, but maybe a partial window. 

[Melissa5000]

On average my sleep was better last week.

 

I can cycle a bit more and feel that I am moving in general just a bit more. 

 

I still have to be very carefull. I would soon overdo it. Not that I really do so much but I get easily injured by simple housekeeping, gardening or even typing. 

 

I am still in withdrawal from 1 mg lyrica. BUT I see the first tiny signs of improvement. 

[Melissa5000]

The last days I slept very well except for one night. In the daytime I feel very tired and apathetic.

And I feel nervepain especially in my hands and arms. Walking is still very difficult. 

 

Wednesday I cycled all the way to the citycenter. I visited 4 shops. I am gratefull I manged to do that!

 

Yesterday and today I spent at home. I sit al lot. Typing is painfull. I feel tired, apathetic and have some brainfog. 

[Melissa5000]

Last weekend I was at my boyfriend his place. I could no sleep for  2 nights in a row. I managed to travel all the way to his place in one bus and 3 different trains.

I was happy I managed that.

 

When I came home after a few days, I was so tired that I could sleep easily. The following nights I slept very well. AND I was not apathetic anymore in the daytime. 

I take it easy as I am in withdrawal. I still have nervepain. Also some pains around my spine or chest. I think lack of movement has something to do with that. When I walk around gently and stretch very mild it improves. 

 

It is cold weather suddenly! It might contribute to the stiff muscles. So I wear a thick layer of warm clothes now.  And I had to put the heating on. It was only 10 degrees celcius today. 

 

I am on the phone a lot for work and sit at the computer mostly only reading. I can only type slowly.   I read many books too. And I have 2 new meditation cd's now. 

You are the placebo - Joe Dispenza 

Meditations to change your brain - Rick Hanson and Richard Mendius

 

I like the cd's and I hope it will help me to recover a bit sooner from withdrawal. 

[Melissa5000]

Since 1st october I stepped over to a different brand amitriptyline from Switzerland, Amineurin.

 

Since a few days I suffer from a hot face and tingling and itch in the face, scalp and sometimes in other places of my body. It is a side effect from the new brand amitriptyline.  Another side effect is that my body gets very hot when I do a mild chore like dusting. I had these side effects too from generic amitriptyline.

 

Now I have to wait and see if I get sun allergy from this brand too, like I got from generic amitriptyline. I was this afternoon in the garden for 5 minutes and it was sunny. I pray I am not allergic. I can live with the hot body, face and  tingling/mild itch. But sun allergy is unbearable. 

[Melissa5000]

As there is hardly any sun (only factor 1 or 2) I seem to manage it with the amineurin. On sunny days I put suncream on (factor 50).

When I was outside in the sun I feel in the evening tingling and itchy nerves in my face. But no rash yet! 

 

My sleep has been very poor lately. Last week I managed to do some more housekeeping and gardening compared to before. So that is an improvement. I still cannot do as much as I want. My boyfriend helps me in the garden and with a few heavier chores indoors. 

 

I visited a birthdayparty all afternoon till the early evening. It went ok. But I was very tired after it. I still cannot walk very long. But my walking indoors seems to improve a bit. 

 

This week I woke up with low back pain that goes through the legs too. In the mornings I have to stretch and walk laround bended before I can stand up straight. It is muscle pain. 

 

It takes very long before my body overcomes the 1 mg drop in lyrica. 

[Altostrata]

54 minutes ago, Melissa5000 said:

It takes very long before my body overcomes the 1 mg drop in lyrica. 

 

Are you taking the Lyrica in a liquid? If so, please check the expiration date on the bottle.

 

How about the itching? I am concerned you are allergic to the new amitriptyline.

[Melissa5000]

I make my own liquid from new Lyrica pills. I suffer still withdrawals from an 1 mg drop. 

 

Yes I  suspect I am allergic to amineurin. I am also allergic for many generics amitriptyline I tried. The brand I used to take, Sarotex retard, is off the market since july 2017.