Melissa5000: nerve/muscle pain/burning after fast taper

[ChessieCat]

Some members have found when they hold for a while that their symptoms start to worsen or don't improve and they find that they improve if they make a reduction.

 

Instead of doing a full 10% reduction you could make a small tester reduction of anything between 1%-5% and see how things go.  If things didn't worsen or improved then you would know that you were heading in the right direction.  You will need to keep daily symptoms notes so that you can see how the reduction is affecting your symptoms.  We can't make the decision for you.  We can only provide the information so you can make an informed decision.

 

Micro-taper instead of 10% or 5% decreases

Rhi's "Start Small, Listen to Your Body" Taper Plan

[Melissa5000]

Thank you ChessieCat for this "test reduction " advice! I'll try to taper just one bead of amitriptyline as I wonder if this tiny dose was helpfull or maybe not at all anymore.

 

Today I taper one bead from 9 to 8 beads and then I'll have to wait and see what happens. This is probably the only way to find out. I have been holding for over  6 months now so I think it is not irresponsible to try to taper a little bit after such a long time. I leave the lyrica untouched. I keep it at 125 mg. I clearly felt myself improving after every tiny updose of lyrica in may/june this year. So I know for sure that the lyrica was helpfull at the time. The lyrica can maybe helping to catch up some of the amitriptyline withdrwals. 

 

If I ever manage to start a lyrica taper in future I'll try a less than 10% reduction plan. 10% of my current dose of lyrica is 12,5 mg. I don't think that I can reduce bij so much!. But a tiny reduction might be possible in future. 

[Melissa5000]

Last night I slept only 6 hours. I had a lot of muscle tension and wild scary dreams when I woke up.

 

I managed to change the bedsheets and do some laundry. It took around 30 minutes. After it my arms and hands were burning. So I decided to rest for a while. After the rest the burning became less intense. 

 

It is almost a new year! I hope that 2019 will bring us a much better health and many improvements!

 

Happy new year! 

[Melissa5000]

Last night I slept 7 hours. But I could not get up because I was so tired. I fel asleep again. I was dreaming a lot. In between I woke up a few times. I stayed in bed too long. I overslept! I guess I needed the rest.

 

I washed my hair and did the laundry. After it I had nervepain on my arms. I cooked. The nervepain is a bit less now.

 

Mentally I am not tired. But physically I am. My sleep was up and down the last few weeks.

 

I try to cope as best as I can. Today will be my second day on 8 beads.

 

The best wishes for 2019! Lets start healing!  

[Melissa5000]

Last night I slept only 5 hours. But I decided to get up anyway. I didn't want to oversleep again.

 

I cycled 8 km tot the city center. I went to Specsavers to pick up my new glases. It will take a few days to get used to the new strength. But I had them on since I left the shop. After it I went shopping! I never expected that I could manage that! I visited several shops. I tried to find a new wintercoat in sale but there was nothing suitable. I'll try online later. I cycled home.

 

Then I had very sore calves from walking and standing. And I was very tired. Musclepain everywhere. I bought a very soft bra because I have a lot of musclepain in my chest lately around the ribs. At home I immediatelly put in on! What a relief. 

[ChessieCat]

On 1/1/2019 at 3:53 AM, Melissa5000 said:

Today I taper one bead from 9 to 8 beads

 

That is an 11.11% reduction.  Not a tiny tester reduction.  If you start getting withdrawal symptoms it may be better to do a small updose.  Maybe try dissolving one bead in water and taking 1/2 of the solution.  Please see:

 

Tips for tapering off amitriptyline

 

"Theoretically, you should be able to make a solution of amitriptyline in water, and use an oral syringe for precise dosing. See How to make a liquid from tablets or capsules "

[Melissa5000]

OMG! I thought one bead is only around 0,24 mg. This is 100 times slower than the last time. Then I tapered 25 mg! (In the hospital I was told it was only one capsule and I could just stop it.)

 

I do have a syringe. So I should make a drink of one bead and drink half of it........ 

 

I am surprised! But you are probably right. The slower the better. Thank you. 

 

Till now I am more or less the same as I was before the taper of the bead. Not many changes...........YET. Withdrawals might show up later. 

[ChessieCat]

1 minute ago, Melissa5000 said:

Withdrawals might show up later. 

 

Yes, I think it would be better to take 1/2 bead even if symptoms haven't shown up.  It's just not worth risking it.

[ChessieCat]

Or you could even take 3/4 of the solution so 3/4 of a bead.  That would be about a 2.8% reduction.

[ChessieCat]

It takes about 4 days for a dose change to get to full level in the blood and a bit longer for it to register in the brain.

[Callie]

Hello, Melissa5000!

 

Sounds like your Christmas was pretty good but sorry to hear that your symptoms increased once again.

 

Thanks for explaining the type of arm pain you have. Yes, mine is the skin only; but nevertheless, we have a similar situation in that we don’t want to move our arms. It's always a challenge getting through the day because of it.

 

You mentioned in one of your posts that you are losing your hair. Yes, me, too, for a year now—off my scalp. Also, it’s completely gone from my arms and underarms. My toe nails also stopped growing.

 

I’ve heard of so many different reasons for hair loss and, most recently, low Vitamin D3 levels. I went to a new doctor, and she discovered that my previous and current blood tests show very low Vitamin D3. It’s been low for about a year now (as long as I've been losing my hair), and no other doctor ever mentioned it to me. Now I’m beginning to think perhaps that is the reason for my excessive hair shedding. I started taking a D3 supplement hoping that it will reverse the hair loss I’ve been experiencing. We’ll see.

 

I also suffer from insomnia. I only get an average of about 5 hours a night, and it’s broken sleep. Funny thing is that I never have the sensation of being tired. I don’t have hunger or thirst sensations either, but I do eat and hydrate.

 

Anyway, I’m sending you the best wishes possible for a Happy New Year. Just remember one thing every day of 2019, and that is that you are healing. You may not sense it, but you are healing. Believe that strongly in your heart because it is the truth, Melissa5000. Everyone will beat this demon. It will just take time. Patience is a virtue!

 

Callie

[Melissa5000]

Hello Callie! For hairloss there are may causes. I hope the vitamine d3 helps you. My vitamines are checked manyt imes and my blood levels were ok.

 

I feel immediatelly tired if I don't sleep enough. Never being tired sounds better. 

 

Thank you so much for your positive words! They really cheer me up! The best wishes for 2019! 

 

 

Last night I could not fall asleep so I read a book. It was cold in the bedroom so I put the heating on. Then I fel asleep. It was a soft sleep without the muscle tension. I slept 7 hours, but needed some more sleep. Today my right brest is painful. Today it was 4 weeks ago that I had my period. So I guess my brest hurts again because of the pre menstrual syndrome. 

 

I did the laundry, cooking and washing the dishes. I needed to take it easy today because I had done so much yesterday. I did not want to trigger the storm of nervepain. I had some musclepains from yesterday but not too bad.I feel a little tired because of the lack of sleep. My hands and fingers hurt a bit. For the rest I feel as my usual wd normal baseline. 

[Melissa5000]

Last night I slept 7 hours. Soft gentle sleep again without the muscle tension. I prefer to sleep 8 hours but 7 is quit ok.

 

I got the chrismas tree down and carried everything to thr 3rd floor. I did the laundry and cooking and washing dishes. I have been busy for a few hours. After it I was a little tired and my feet were burning.

 

I see sharp with my new glasses but I have to adjust to the toric glasses. I never had that before. I see a circle as an ellipse. When I look in the corner of my eyes I see everyhting thinner. I hope my brain adjusts quickly.

 

Today is my 5th day and now I notice withdrawals:

- Irritated nerves in feet and hands ( a bit more than usual)

- Mild burning skin in different places.

- Itchy skin, especially in my face and on my ears

- My legs and feet are sooner tired

- A little nauseous a few times for a few seconds

 

Positive withdrawals/improvements:

- My body feels a bit warmer 

- I feel a little less hungry, still hungry but less intense (that is very welcome as I need to loose weight)

- My sleep is gentler without the all over body muscletension

 

I was waiting for the 5th day because that was the day amitriptyline withdrawals showed up the last time. It is this time exactly the same timing but less intense than the last time when I "tapered" 25 mg to zero. 

 

 

 

[Melissa5000]

Last night I slept 8 hours.

 

I have been decluttering and cleaning today. I have been busy for over 3,5 hours. Now my feet and right hand burn.

The muscles in my arms/back/legs and feet feel very tired. 

 

withdrawals:

- Irritated nerves in feet and hands ( more than usual) worse

- Mild burning skin in different places.

- Itchy skin, especially in my face and on my ears (less intense)

- My legs and feet and back are sooner tired

- A little nauseous a few times for a few seconds (gone)

 

I am worried about the burning hands and feet. I fear it will hinder my walking. It is more difficult now to keep standing a lot or simply walk trough the house. 

I never knew that only one tiny bead would cause so many withdrawals. 

I decided to updose half a bead. 

 

I crushed one bead with the back of a knife. Then I put it in 10 ml water. I steered it and let it soak for many hours. 

To be honest it did not dissolve in the water. When I steered again I could still see the particles swirl around in the water. 

So I steered, sucked up 5 ml with a syringe, and drank the 5 ml with some extra water in a glass. 

 

@ChessieCat : Did I do the updose correct? What do you think of my situation? Can I resume the taper at a slower speed like this? I guess tapering won't be possible without some withdrawals. Nothing comes for free! I just want to avoid a big setback. 

 

Now I am tired and have to sit down again. But I'm happy that I could clean so much today. 

I am expecting my period very soon. PMS and my period always make all my pains worse. So this also plays a role. 

 

 

 

[Melissa5000]

Last night I slept 7 hours but I woke up many times.

 

Today I cleaned 2 times for half an hour with a big breake in between. I am tired and my arms and hands hurt so I could not do more than this. But I am happy I did it.

 

I spent a lot of time sitting today. Now in the evening I can only sit and rest.

 

withdrawals after the updose:

- Irritated nerves in feet and hands ( more than usual) a little less intense

- Mild burning skin in different places. gone

- Itchy skin, especially in my face and on my ears (gone)

- My legs and feet and arms and back are sooner tired (a little better)

- A little nauseous a few times for a few seconds (gone)

- All day painful arms (the same)

 

The updose was helpful. I still have painful arms and hands, feel sooner tired and feel sometimes irritated nerves in my feet and hands. Those withdrawals stay. I hope those withdrawals can dissapear with holding. (Is that right?)

[Melissa5000]

Last night I slept 9-10 hours and I slept a little deeper.

 

Ik woke up with irritated nerves on my hands and some itchy skin on the face and body .

My ands are more sensitive to hot and cold. 

 

My period finally arrived. 

 

I hope those irritated nerves will subside by holding. I worry about it. I don't know what I should do. Any advice?

[Melissa5000]

I feel it burning in my arms again and have burning sensations everywhere. My arms hurt. I have itchy skin in random places or irritated nerves. I had a hot flash today. I was too emotional. I had to cry over nothing a few times. 

 

This day was not so good. I did only cooking, dishes and some laundry. I had to sit down a lot today. So I took it easy.

[Melissa5000]

Last night I only slept 5 hours. I could not fall back asleep. I had irritated nerves in different places in bed. I could not sleep because of it.

 

Now my arms/hands and feet hurt a bit and I have still irritated nerves end burning skin in several places. My body feels very tired. 

 

I need to go on my ebike to the hospital for a check up. I hope I can get there and back without damaging myself too much. Now I doubt if I have the power to go. Yes willpower. But my body that is a different story. 

[Melissa5000]

I made it!   The wind was very strong. 7 Bft. I cycled to the hospital. When I arrived I had to do some walking and standing which was difficult for me.

After it I went to the pharmacy and the supermarket. I've done a lot. 

 

Now I have musclepain, especially in my calves and arms. I am tired. Here and there I have some irritated nerves and burning. But I am happy I made it!

[Melissa5000]

Since dinnertime I feel a little better. All my syptoms are less intense. I managed to cook and wash the dishes. For the rest of the evening I had to sit down. 

I have musclepain in my legs. The irritated nerves/burning/itch is less intense. 

[Melissa5000]

I slept over 9 hours and very deep. I woke up with muscle tension all over body. No itcy and irritated nerves in bed nor burning skin.

 

Morning

The muscle pain in my calves was much better. Itchy face in the morning.

 

Afternoon

I have been cleaning for over 2 hours. After it I had a little nervepain in my arms and feet. Mild musclepain in my calves. 

 

Evening

Cooking, washing dishes

resting and sitting

chewing led to fache ache

Painfull fingers when typing, burning hands

 

I clearly suffer withdrawals. I hope this will subside! 

 

[Melissa5000]

I slept only 5 hours. So today my body was very sensitive. Especially in my feet, toes, arms and fingers.

 

I cleaned for one hour. After it my right hand was burning and my legs were very tired. My arms hurt.

 

I had to sit down for the rest of the day. Now I take it easy. 

 

 

 

[Carmie]

Hi Melissa, 

 

I’m so sad to read that you are always struggling so much with pain, it must be awful. One of these days it will be gone, it just takes such a long time for our brain to heal itself. 

 

You said you were itchy. Are you on a specific diet at all? I found when I ate too many high histamine foods I would get itchy. 

 

Take care, sending hugs🤗

[eymen23]

2 hours ago, Melissa5000 said:

I slept only 5 hours. So today my body was very sensitive. Especially in my feet, toes, arms and fingers.

 

I cleaned for one hour. After it my right hand was burning and my legs were very tired. My arms hurt.

 

I had to sit down for the rest of the day. Now I take it easy. 

 

 

Hi Melissa,

 

I’ve read a lot of your posts recently, and you come across as incredibly brave. These withdrawal symptoms sound very difficult to work around, but I think you’re doing a great job of it. 

 

By the way electric bike sounds like a great idea! Really hope you get some more relief and healing soon! 

[Melissa5000]

Hello Carmie! Thanks for your support. I only have a minor itch now. It is for me often a symptom in early withdrawal. It goes away on its own. I am not on a diet. Maybe a low histamine diet can help, I just never tried. I am hopefull that the itch will fully dissapear again. My most lingering symptoms are nervepain and musclepain. About those 2 symptoms I am a lot more worried!

 

Hello eymen23! Thank you so much for your kind words. It means a lot to me!

 

Last night I slept too short again. I slept 5-6 hours. I woke up by the doorbel. The package deliverer was at the door very early! So he destroyed my nice sleep! I was really sleeping well. But could not fall back alseep again. So I got up. 

 

Now I am very tired. I have to go into town for my glasses again. I have toric glases for the first time. And it deforms my environment. A round plate looks oval. I doubt if my brain will adjust to the new glasses. After 10 days I still have difficulties. 

 

 

[ChessieCat]

7 hours ago, Melissa5000 said:

I have toric glases for the first time. And it deforms my environment. A round plate looks oval. I doubt if my brain will adjust to the new glasses. After 10 days I still have difficulties. 

 

I wear multi focal glasses and the first two prescriptions I had very little trouble adapting to them (pre tapering).  The third prescription took several months to adapt to them.  I have had them for 14 months now and every now and then I still have a problem with them.  I do think that some of it is related to tapering my Pristiq.  Sometimes I just don't seem to be able to focus my eyes.  I try to adjust the position of the glasses but I still can't focus.  I end up having to take them off completely and look into the distance without them, blink a few times, then put them back on.  It's as if my brain needs a reset.  It has happened at least 6 times over the last few months.

[Melissa5000]

 I went on my ebike into town. I went to Specsavers. The optician checked my eyes. But I just need more time to adjust to the new glasses. Het tightened my glasses so they don't slip down my nose anymore. 😀

 

I visited a few shops and went to the supermarket. Now I am at home and are resting again. Maybe I sleep better tonight. That is mostly the case after a few short nights. 

My body feels tired and my arms hurt a bit.  I'm going to read a book. I am happy that the shopping trip went all right!

[Melissa5000]

Oh ChessieCat, those glasses have been a big problem for you!

 

I can focus my eyes. I don't have problems as long as I look in front of me. But when I look up or down or in the corner of my eyes the world deforms for me. But it seems to be normal as I had never toric glasses before. I expect that this too shall pass!

 

I have had blurry sight and problems focussing my eyes before when I tapered at a much faster speed. Sometimes it comes back for a few times. But it has now gone for me for a longer period. This symptom is withdrawal related indeed!

[Melissa5000]

Last night I slept 8 hours. 

 

Today I have some pain in my arms, fingers and this time in my breasts when I move my chest or my arms. I think it has to do someting with the big breastmuscles. My breasts also feel more swollen, probably hormonal swings. It leads to stabbing pains in my breasts for a few seconds several times during the day. I am still tired after 2 difficult days with little sleep and lots of chores. Today I did only some decluttering, cooking and washing dishes. For the rest I have been sitting a lot. I needed an easy day. 

 

 

[Melissa5000]

I slept 8 hours.

 

But I woke up with all over musclepain and painfull arms.

 

After brunch with my boyfriend he drove me to a supermarket by car. My boyfriend did all the lifting and picking up groceries for me.

I could hardly walk and stand in the shop. I was very tired, felt weak and had lots of musclepain. I had difficulties remembering, concentrating, felt a little nauseous, trembling all over. I wanted to sit down on the floor. I felt a few times that I would faint. I had to do my utmost to prevent this and keep standing and walking. Just on mental power I made it. I thought about the groceries I wanted to collect instead of the pain and tiredness. Just a few more steps, thinking about the greenery, the chicken, the milk and the bread. From item to item. I did a deep breathing exercise when we had to stand in line at the cashier to calm my cns. 

 

I cooked and washed the dishes. That's it for today. I will sit down tonight as walking and standing is too much for me now. I feel exhausted! 

 

I hope I will feel a little better tomorrow. I don't know if I should go on like this or do an updose to 8,75 bead. I am at 8,5 bead now. Any advice? 

 

 

[Melissa5000]

I slept 8 hours.

 

I had a nice day with my boyfriend. We just stayed at home. 

The extreme musclepain has gone today. But at the computer my arms hurt a lot. 

 

I try to relax my arms.

[Melissa5000]

I slept 5,5 hours.

 

I had my last meeting of the pain education course. Knowing the theory doens't mean that I am feeling improvements. I tried a lot!

 

I had a big setback in the beginning of december december, when I slowly increased my activity a bit.

 

Now that I tapered only 0,12 mg amitriptyline, I have another setback because of withdrawals. The painspecialist told me that my recent taper had probably nothing to do with my new setback. 

 

One patient in the course tapered some of his medication when he saw progres because of the mindfullness and graded activity. His pain worsened so badly that he decided to updose everything. 

 

Another patient had been for a few years on Lexapro. But it did not help her for pain. She tapered everything in several months and had no withdrawal at all! How is this possible. I am covered with symptoms from 0,12 mg amitriptyline and she tapered all her meds without withdrawals! What am I doing wrong????????? I feel like an idiot now.  Can somebody explain this to me? I don't know what to say anymore. For other people it looked like I made all my symptoms up!  

 

Any advice?/Explanation?

[Altostrata]

Hi, Melissa. How do you take half a bead?

 

Yes, you might go back to 9 beads. Let us know if that helps.

 

Do you spend a lot of time at the computer? If so, that's the source of the muscle tension in your back and arms. Stretching exercises will help. You might get physical therapy to learn some good exercises.

[Melissa5000]

Hello Alto! Thanks for stopping by. I take half a bead by crushing the bead to powder. Then I ad 10 ml water, steer it, take a syringe and I drink half of it. Easy.

 

I don't type a lot or use the mouse a lot. I used to work long hours at the computer without any problems. In heavy withdrawal my arms started to hurt when typing or using the mouse for the first time. But my arms also hurt with any other modest movement or even stretching. That is one of my severest withdrawal symptoms. Muscle pain and nervepain caused by movement or activity.

 

I tried physical therapy but I had to stop that when I tapered 25 mg lyrica in februari 2018 and crashed.  It was too heavy for me. I could not do the exercises anymore. Too painfull!!!!! I never recovered from the crash till now. I am not able to do physical therapy. 

 

Why should I go back up to 9 beads and make this taper attempt undone? I'm sure it helps. It will even help if I updose a lot more! But how on earth will I ever get rid of my meds then? Isn't that the goal of this site? How about ChessieCat her advice to taper again? Now I am confused what to do. The advice of you two is contradictory. 

 

 

 

 

 

 

 

[ChessieCat]

2 hours ago, Melissa5000 said:

But how on earth will I ever get rid of my meds then? Isn't that the goal of this site?

 

The goal of SA is to reduce drugs.  We use the term "lowest effective dose".  That may mean staying on a low dose of a drug, or getting off completely.

 

2 hours ago, Melissa5000 said:

How about ChessieCat her advice to taper again? Now I am confused what to do. The advice of you two is contradictory.

 

My suggestion was a small tester reduction:

 

On 12/31/2018 at 1:42 PM, ChessieCat said:

Instead of doing a full 10% reduction you could make a small tester reduction of anything between 1%-5% and see how things go.  If things didn't worsen or improved then you would know that you were heading in the right direction. 

 

What you did:

 

On 1/1/2019 at 3:53 AM, Melissa5000 said:

Today I taper one bead from 9 to 8 beads

 

You made a reduction more than SA's recommended 10%:

 

On 1/3/2019 at 1:39 PM, ChessieCat said:

That is an 11.11% reduction.  Not a tiny tester reduction.

 

Alto's suggestion is to return to your previous dose:

 

3 hours ago, Altostrata said:

Yes, you might go back to 9 beads.

[Altostrata]

Have you tried acupuncture? How about osteopathic manual therapy?

 

If your symptoms got worse after you reduced the drug, the reduction probably caused them. Since pain is your most prominent symptom, you might have to find another way to control it before you go off the drugs completely.