Melissa5000: nerve/muscle pain/burning after fast taper

[Altostrata]

Melissa, perhaps you should restore the Lyrica dose to 125mg, stabilize, and try to go off amitriptyline finally.

[Melissa5000]

Since 4th august I am on 124 mg lyrica. In july I made many changes but had to updose. 

 

I am not recovered from the 1 mg drop. But I have had many small improvements. I think I will make my brain crazy if I updose after such a long time. The worst of the withdrawals are allready gone. I still am not stable. But I have never been stable at all since september 2017. I was improved a lot in june 2019. I thought I could taper again........ but it was a failure.

 

I tried to taper 0,01 mg drops in amitriptyline. But after a few weeks it turned out that I went too fast. 

 

I cannot taper amitriptyline as I am in a weak shape. (An updose in 1 mg lyrica would not make me stable, maybe a bit better, but not really stable.) I am Improving slowly, but still very weak.....

 

I fear I will have to live with sun allergy from the meds as I cannot taper. I think that I need to wait much longer till I get much stronger. Maybe then...... I can try a very slow taper on amitriptyline. But it will take many years to get off. If 0,01 mg causes that I suffer extreme nervepains!!! ? If I would taper off in lets say one year I would probably become bedridden. 

 

It is so difficult to decide what to do? 

 

Alto what do you think about my idea of holding longer till I feal a lot stronger again. (Even if this would cost me a year.) Would my chances be better when I would start a microtaper from that point? Is it possible that withdrawals are less brutal when I start tapering when I feal much stronger? 

 

 

[Melissa5000]

 I feel 

 

I made stupid mistakes in the post above but I cannot edit it anymore.

 

[Melissa5000]

Alto I do have another question.

 

When I dropped 25 mg at once in 2017 it was brutal.

 

In 2018 I updosed 9 beads (2.1 mg)  as you adviced. They helped a bit but not so much that it was all solved.

 

Now when I try to drop 0,01 mg amitriptyline I get almost more pain than when I dropped 25 mg in 2017.

 

How is that possible?

 

My common sense says that that reaction is way too strong! It doesn't seem to make sense. But it happened to me in july/august 2019.

 

What are your thoughts about that? 

 

What is best: taper off NOW because of the sun allergy? Or wait and become more stronger in despite of the sun allergy. And taper off after being more stable?

[Melissa5000]

After a night of sleep my inner feeling says I need to stabilize more and get stronger before I start to taper again. 

 

The improvements are there. Every month since I stopped making changes there are more small improvements. I need to wait till the improvements add up to a big snowball. 

 

No more changes for now but riding it out!

 

As soon as I feel strong enough I will start to taper the amitriptyline off course!

[Erell]

Thank you for your support on my thread ❤

 

I wish you a Nice day !

[Melissa5000]

Now that the worst withdrawals are gone I notice I become a little more active.

But the activity causes strange extreme musclepain. My hamstrings were very painfull the last days but my lower back has improved. For months I wake up with musclepain around my chest. The chestpain improves as soon I I get up and walk around a bit. 

 

My sleep has improved from 4/5/6 hours a night to 6/7 hours a night.

 

Because of the muclepain I have to make sure I don't overdo it. I am still very fragile but I enjoy the small increase in activities.

 

Mentally I am also a bit stronger. 

[Melissa5000]

At this moment I realised that my cognitive functions have improved enormously. 

I don't have cryingspells anymore.

I am no longer forgetful. 

My concentration has improved.

 

And I am grateful for it! 

 

Physical symptoms bother me always longer: lack of sleep, musclepain, nervepain

And I notice that I am still sensitive for stress.

 

I am looking forward to discover more improvements as time goes by. 

[Altostrata]

On 10/26/2019 at 5:13 AM, Melissa5000 said:

The improvements are there. Every month since I stopped making changes there are more small improvements. I need to wait till the improvements add up to a big snowball. 

 

Great news, thank you, Melissa.

[Melissa5000]

Last week my sleep was better.

 

I started to do modest exercise again. 

Daily I go for a small walk (1400meter) or I cycle 10 minutes on a hometrainer + I lift 0,5 kg weights.

 

I have to try 2 more generics for the Lyrica. My insurancecompany insists on it. In 2015 I tried a generic. It caused sun allergy. Now I have to try 2 extra generics because they are cheaper. If both are causing problems too then I can go back to brand Lyrica. I hope my body accepts the generic. 

 

 

[Altostrata]

Oh, very happy to see those improvements continue! Sorry you have to deal with the drug substitution. Maybe one of them will be okay.

 

What is your current drug schedule -- times of day and dosages?

[Melissa5000]

As I get up: 49,5 mg lyrica and 0,7 mg amitriptyline

8 hours later 49,5 mg lyrica and 0,7 mg amitriptyline

bedtime 25 mg lyrica and 0,7 mg amitriptyline

 

So 8 hours apart.

 

This is the best scedule for me. In the daytime I need more meds to function.

In bed I am just laying still and don't have to move or exercise. That allows me to take only 25 mg lyrica. 

 

I feel better after I take my meds. 2 hours after I take them they start to fully work and I feel even better.

My symptoms are the worst as I get up just before I take the morning dose. At that moment I have the lowest dose of meds on my blood. 

 

For me it is very obvious that my symptoms are from withdrawal.

 

 

[Altostrata]

When you say you feel better, do you mean less pain?

[Melissa5000]

Yes less pain! 

 

Most other symptoms are a lot less intense now.

3 months ago I had fear, panic, cryingspells, thoughts about suicide, bad concentration, very forgetfull, negative thoughts and rumination too.

Now those symptoms are gone or milder when they reappear in a wave.

 

3 months ago my nervepain and musclepain was a lot worse. Now it is still quite intense, but it has improved. My pains are mostly my only symptom today.

 

I guess my physical symptoms are my worst symptoms because I took 2 meds for pain relieve. 

[Melissa5000]

Sunday I did not feel too well. I have a bit of a cold and I have my period. But my sleep was quite ok.

 

I went for a walk with my boyfriend. We walked 2 km at a speed of 4 km/hour. (We have sportswatches.)

 

I was very happy that I managed to walk this distance and that I did not get a wave of symptoms after it! Only a bit tired and I had to sit down. 

[Melissa5000]

I put the christmastree in the livingroom on 7th december. 

 

I had a nice weekend with my boyfriend. He is so nice to have around me.

 

I made a mistake in my amitriptyline solution. I took 10% less amitriptyline for 3 days. Last night I discovered my mistake and took 0,07 mg again. And totday I made a new liquid. The correct dose. Now I feel instantly better. What a relief. I had sore arms and feet, was extremely tired and felt depressed, had a nightmare, sleepingtrouble. 

 

I was in time to prevent the big crash I usually feel on day 4/5 of a taper. It was not my intention to taper at all. I just made a mistake with the liquid. 

[Altostrata]

Good that you found the error, Melissa. I hope you have a peaceful, pleasant holiday.

[Melissa5000]

The last days were more difficult for me. I had my period and that ramps up withdrawal symptoms.

 

I have been busy preparing for Christmas. My boyfriend is here now and tomorrow we will visit my family.

 

Merry Christmas everybody! 

[Melissa5000]

Last week I didn't get enough sleep. It takes hours before I can fall asleep. And the quality is sometimes poor too. Many dreams. I often wake up after only 4-6 hours sleep. 

 

I am in a wave now. I have more nervepain, musclepain, my body is tired. I had a few nice Christmas days with family and my boyfriend.  I went to the gym with my boyfriend 27th december. It was super nice to be there again. I took it very easy but had severe musclepain after it for days. When I have had a poor night of sleep the fitness gives me extra musclepain. 

 

The only way to get through the day is by sitting still on a chair or on the couch all day. I am a lot on the phone, read a book or read on the internet or I just watch tv. It is what it is. I try to make the best of it. (But there are sooooooo many things I would love to do now!!!!!! Patience..............)

 

I am sure it will pass after I catch a few nights of good sleep. Now I just hope for better sleep. 

 

Happy and healthy new year everybody!    🎆 🎇🎇

[Erell]

happy and healthy new year to you ❤️

[Melissa5000]

Thank you Erell!

 

This year I started with a cold and fever. It came on top of withdrawal. I was quite sick and spent 12 hours a day in bed.

 

Now I recovered from the cold and fever but I am still very tired. It must be the aftermath.

 

I can only spend one hour a day cleaning/groceries shopping/doing chores. 

My house is too dusty now to be honest! But I managed to do the laundry, clean the bathroom, toilet and kitchen. 

 

I am on a healthier diet. I eat more alkalic now. I try to avoid  processed food as much as I can, I use sparingly salt and sugar.

 

[Melissa5000]

I have a new cold. I have fever too.

 

Lately I am on top of the nervepain extremely tired and I feel dizzy during physical movement. 

 

My boyfriend is here now but I can only sit in the house now unfortunatelly. 

[Melissa5000]

I have the flue (again) and I have lots of musclepain from a little too much typing.(I was just recovered from the flue.) My boyfriend has had it 4 times this season. He probably infected me too. I have to wait it out. It will pass.  I suspect I catch the flue so easy because I am in withdrawal.  I am going to have my period as well. So all together I am not at my best. At night I wake up because of coughing and blowing my nose all the time. So it is harder to sleep in these days. I guess it will pass some day.

 

I work a lot on the phone from home. It is the only job I can keep now. I would love to go back to my old jobs I used to have in finance. But that is unfortunatelly not possible. 

 

My diet goes very well. I was 100 kg! Too heavy. Now I lost 5 kg so I am at 95 kg now. 

 

 

[Melissa5000]

I had a bit too much water in my amitriptyline solution. I noticed because I got extreme pains in my arms and cryingspells, fear and panic. I was a complete wreck. 

 

I made a new solution and I improved immediatelly. 

 

It is so scary that just a tiny drop too little medication can cause this. This makes me thinking: How will I ever resume my taper and get off this!

 

I really hope a moderator has an idea. I am since june 2018 on 2.1 mg amitriptyline. 

 

Please Help!

 

@moderators I hope you have some advice, I really need it. 

 

 

[Melissa5000]

Who else has this problem?

 

I am holding amitriptyline since june 2018 at 2.1 mg.

When I tried to taper even 0,01 mg last summer I got extreme withdrawal symptoms: extreme nerve pain and muscle pain, cryingspells, fear, despair, ruminations and suicidal ideation. I was not able to walk or use my arms anymore. Lack of sleep, dizzy. I would have become totally bedridden and dependent if I would not have updosed. 

 

I made a mistake in the liquid a few days ago. I added a little bit more water. I noticed this by extreme arm pains, fear, panic, despair and body pains everywhere. And I could hardly sleep. 

 

I would love to taper this drug but I really can't! I would become totally dependend, bedridden and hospitalized. It feels I am stuck for the rest of my life. How do I ever get off without ruining myself or almost killing myself? I am holding for 19 months now. 

 

Are there more fellow sufferers who go in extreme withdrawals after only tapering a very small amount? Are you also stuck on a drug? Are there more people in the same boat now? 

 

I hope some people read this who had this in the past and later on managed to taper off without the super extreme withdrawals. 

Just to give me and fellow sufferers some hope. 

[Altostrata]

Melissa, I moved your post here.

 

It's possible you will be able to taper, but your nervous system is upset right now because of the mistake in mixing. How big an error was it?

 

You were doing better only a month ago, you'll need to let your nervous system settle down.

[Melissa5000]

Thank you for the reply Altostrata. The mistake was only a tiny drop. If 0,01 mg is too much to taper after a 19 months hold, How can I taper later on?

 

I tried to taper this summer and back then I failed on 0,01 mg.

 

My nervous system is today back to normal.(withdrawal normal, not recovered).

 

How long should I wait before I am able to restart my taper? 19 months is such a long long time!

 

A taper of 0,01 mg today would make me bedridden, that is the big problem. How will I ever get rid off 2.1 mg amitriptyline?

 

Are there more people like me or am I all alone? Can please somebody give me a recoverystory of someone who could not taper for such a long time? I can't find them. 

Now that my topic is removed I expect nobody will read this. 

 

Please help!

[Melissa5000]

Today I went to my general practioner with my boyfriend.

 

I told him I can't taper off now because that would make me disabled and probably bedridden for a long time. But on the other hand I have sun allergy from the 2.1 mg amitriptyline. 

I am stuck.

 

The general practioner advised to stay on the same dose as I agreed with the pain specialist in the hospital. 

For sun allergy he recommends to avoid the sun as much as possible, use sunscreen and to wear a hat and long sleeves and long trousers. 

He recommends mentol gel and cetirizine tablets in case I still get the sun allergy. If the itch is very bad I can just ring him for a prescription for corticosteroide cream. This cream is only for an emergercy, I can't use it daily. 

 

I feel a bit relieved. There is an emergency cream just in case if the itch is running out of hand. The itch was ubearable in the past. 

This was my new gp. The old gp left. I can ring him in case of any trouble with the withdrawal pains or sun allergy. 

 

[Melissa5000]

I notice that since the flue has gone I am a little bit stronger. I can do just a little bit more in the housekeeping than before.

 

Since friday I feel itchy all over! It is in my face and scalp and all over body even under my feet! I sometimes have difficulties wearing a woolen scarf or laying under warm woolen blankets. 

 

It might be a new withdrawal symptom. 

[Melissa5000]

The itch went away after 5 days. I feel like my wd normal baseline. Still nervepain in arms/hands/fingers very often. And my walking is still limited. A few days ago I walked slowly 2 km. It was all I could do. But I am very grateful that I CAN walk 2 km. Together with an ebike I can visit a lot of places again. 

 

 

[Melissa5000]

Last week I felt quite good so I tried to do a new chore. But it was too heavy for my arms. I had to recover for days. I have had pain from my shoulders to my arms and hands. I had to rest for many days as I could not do much with all this pain.  I still have a little bit pain.

 

I will try to restart some modest housekeeping from now. 

 

I am still on my diet. I avoid sugar, salt and processed food and eat healthy modest amounts. The weight is coming off very slowly. 

 

[Melissa5000]

I still suffer from the setback. My shoulders, arms and hands hurt. Also my back, legs and feet.

 

I am gratefull that I managed to go grocery shopping on my ebike. I went to a new store 5 km from my house. My arms hurt from the tripp but I have a lot of food at home now. I am proud! 

[Melissa5000]

The setback is improving a bit. My shoulders, arms, elbows, knees and hands hurt. Also my back, legs and feet. But on days after a good night sleep it is less intense. When my sleep was poor it is still very bad. 

 

Last week I managed to do some housekeeping and today I went grocery shopping again. 

 

This weekend I''ll enjoy together with my boyfriend. 

[Melissa5000]

I feel a bit better lately.

 

I can walk 3 km now. And I can do a bit more on the computer.

 

My diet goes great. I lost 12 kg now. From 100 kg to 88 kg. 

 

Unfortunatelly I suffer sun allergy now. It is from the meds.

I can only go outside one hour before the sun goes down with sun screen on. I have an UV hat and UV gloves too just in case I need to go outside in the sun.

[Melissa5000]

I still feel a bit better. In general I can do a bit more housekeeping, I can mow the lawn and I see on my sportswatch that I have allmost every day 7500 steps now. Or even more steps. Some days I even had over 10.000 steps a day. When I was in a bad shape I only had 3000 steps a day indoors. It is improving very gradually.

 

Unfortunatelly the sun allergy is getting worse as the sun rises. I ordered a few UV protection shirts from Coolibar with long sleeves and 2 extra UV hats. I have to try what works best for me. And I have to wear a scarf and UV gloves. It is the only way to go outside. I avoid the sun as much as possible. I only go for a walk one hour before the sun goes down and I wear a thic layer of sunscreen and  lately also a hat and scarf. Sometimes I go for a walk when it is dark. I do that if I had too much itch from sun allergy from the day before. 

 

My sleep is always up and down. But in general I sleep a bit better. A huge improvement.

 

I lost even some more weight. I am at 85 kilo now. (From 100 kilo) So I lost 15 kilo! I am still too fat! It will take lots of time before I reach a healthy BMI. I need to be 74 kilo.  (Or less) 

I am still on the diet. 

 

I still have pain in my arms and hands. Stiff shoulders. I can do a bit more but I have to be carefull that I don't overdo it. When that happens I get an injury in my arms or hands that can last many weeks. 

I could also injure any other bodypart. But for me the arms and hands are the most fulnerable. 

 

I am not fully healed yet. But I am improved for sure . 20% in my arms? Or in my legs maybe 30% ? 

Mentally I am improved even more! 

 

 

[Melissa5000]

I have not been here for a while.

 

My weight is down to 80 kilo now. (From 100 kilo)

 

In the daytime I have to stay inside the house because of sunallergy. But I can go outside with many clothes on, an UV-protection scarf around my neck and face and an UV-protection hat and gloves on. I prefer to go outside in the early morning or evening. 

 

(The sun alergy is from the generic meds. The insurance does not cover brand Lyrica anymore and the brand Sarotex retard is off the market so I have also a generic for amitriptyline. )

 

Typing is still very limited. But I think I can do just a tiny bit more now on average. 

 

Twice a week I cycle on an exercise bike for 20-30 minutes. I lift a few times a 0,5 kg weight in 3 different positions and I can slowly do a mild step exercise on a stepping machine for  around 1 minute. That is it for fitness. I can't go to a gym because of corona now. But I have many sportstuff at home. So that is no big problem.

 

I walk 2-3 km a few times a week one hour before the sun goes down. Then I get no sun alergy. 

I work a bit in the garden. 

 

I would love to build some more muscles. But it is almost impossible to work out with weihts. So I do what I can now.

I have to stay within my small energy envelope to prevent big injuries.

 

I would also love to type more and work more on the computer. This way I can't aply for a job.

But I do make a modest income from home. I am very grateful for that.