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Melissa5000: nerve/muscle pain/burning after fast taper

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Melissa5000

My general practioner gave me a form and tomorrow I will do some bloodwork. I did many bloodworks before also massive bloodwork in the hospital last year  by the internist. But they never found anything. In 2016 I went to a neurologist for pins and needles, tingling, muscle twitches and blurry sight. He said there was nothing wrong with me after he examined me. He said it was because at the time I tapered a capsule of 75 mg lyrica. (The only doctor I met who said it was withdrawal.) 

 

 

The GP said nortrilen is almost the same as amitriptyline. And as I have big problems with the generic of amitriptyline (Sarotex retard is off the market) I thought it might be worth trying it. I could take 10 beads a day for over 2 years. Then I'm out of my beads...........

 

In the end I hope to live without pills. But I tapered too much. To make my life livable I need to do something. Updose.........Stabalize for a long time........and hopefully later I can taper again. But much slower!

 

 

 

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Melissa5000

Today I seem to feel a litlle bit better. I had a bad night. But in despite of the bad night my walking seemed to be a little bit better. I had to walk 850 meters from the bus stop to my general practioner. That was difficult for me but I managed it. 

 

My right hand is still very painful. My sore toes are improved. 

 

Maybe the 9 beads of amitriptyline start to work? Or is it just a coincidence? 

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sunnylou

Hi Melissa just popped by to see how you are, and how your hand is today. I really hope the Amiltriptyline is starting to work for you. I'm up late, trying to take my dose later to try prevent the morning burning. 

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Melissa5000

Hello sunnylou,

 

How are you? Do you allready notice some improvements from your updose?

 

I am still on 9 beads amitriptyline. I haven't touched the nortriptyline yet. I don't know if I should use that or not. 

My hand is still bad. It may take weeks to recover. The problem is I can hardly use my hands without hurting them. My toes are the same. 

 

Maybe it takes a few months before our updoses are fully working. Thinking back I remember a few situations where I tapered a capsule of lyrica. The first few weeks were bad, then a few weeks followed with improvements, and around 2 months after I tapered there came a new symptom that was worse. It was always about nerve pain. So it takes a long time before all withdrawals show up. Maybe it is also the other way around......that it will take about 3 months before all improvements show up? 

 

If I am wrong, the lyrica I updosed is just not workining as strong as it used to. But......it has still improved my pain. 

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sunnylou

I was thinking exactly the same thing. That maybe it will take a couple of months like the withdrawals took 2 months to surface. I truly hope so. I agree, it feels like its not working as strongly.

 

I haven't been to the Drs yet but I think the Dr would suggest either putting the dose up, (which wouldn't fill me full of hope), or he could maybe suggest tapering off Gabapentin, and onto lyrica, which I think would do me in seriously or maybe he might say to raise the Amiltriptyline a bit. Even that would scare me. Im on 30mg of that. Right now I just want to feel normal again like you. 

 

I'm going to stick this hold out as long as I can bare though, in the hope none of the above are needed. I can't imagine having gone of the Amiltriptyline aswell. I really feel for you, and am anticipating a post from you saying its gone. That would be elation indeed.

 

 I darent say if things are improving. Woke up again with the burning, and today is day 8 of updosing.😕

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Melissa5000

I really hope we see some more improvements by our updoses in the next few months! We need it!

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SkyBlue
1 hour ago, Melissa5000 said:

I really hope we see some more improvements by our updoses in the next few months! We need it!

 

Hi Melissa, 

I hope so too. I'm so glad it sounds like you're continuing to hold for a while. Holding is such a good idea; I see it as a gift to our nervous systems. It's like stepping back (as much as we want to keep tapering!!!) and letting the nervous system do its thing, whatever it needs to do for repairs. 

 

Hang in there and keep letting us know how you're doing. : ) 

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Melissa5000

I can't use my hands properly for 8 months. My toes start to burn if I walk 1000 meter or less.

 

I can't cope anymore. I am too disabled. That's why I wanted to updose. I probably need to updose a little more lyrica. Maybe to 125 mg. I'm not going to updose all the way  to 450 mg of course. But I feel I need just a bit more so I can survive.

 

I always thought it would pass if I would wait and see. But it didn't happen. I realize that I tapered too fast. Now I need some partial relief so I can be strong enough to wait. It may take years to stabalize. And then I have to taper the rest of my meds.......... I don't know how many years I will be waiting and tapering? Maybe like 10 years?!  

 

Today my arms and hands are sore and burning. I try not to use them (so  they can rest) but that is impossible.

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Melissa5000

Every day I suffer from all over body nervepain when I move, musclepain and the worst are my painful hands and arms. My fingers are burning inside.

 

I don't know what to do about it. 

 

I doubt between updosing and "waiting". 

 

How long can it take before my intense burning fingers will improve? I suffer that symptom now for more than 8 months.........

Has anyone an idea?

 

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Melissa5000

The burning hands and fingers and arms are making me so disabled that I can't work. 

 

I wonder if there are more who had this? And did it ever go away? 

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Melissa5000

Today I went to the hospital to see my painspecialist. She gave me a prescription of 150 mg lyrica. Now I can updose slowly some extra lyrica. I don't use the nortriptyline.

 

Still suffering a lot of pain I could hardly walk from the bus stop to the hospital. I have nerve pain in my toes. And nerve pain in my fingers.

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Melissa5000

Today my bloodwork by the general practioner came back normal.

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Melissa5000

I am slowly updosing the lyrica. I am at 120 mg now.

 

There have been some small improvements:

 

- The storm of nervepain around my muscles when I move is less intense and improves with every updose.

- I can stand a little longer and walk a little better inside the house.

- Cryingspells happen less often, but I am quicker in tears than ususal

 

My arms and hands still hurt. Nervepain and burning

Walking outside is still very difficult.

 

The lyrica still helps but it looks like it works less than before.

Can this improve over time? Or is this now just what it is and does the lyrica work less?

 

 

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Melissa5000

Any ideas?

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Melissa5000

I didn't get enough sleep last night. Today my body is super sensitive for pain. So I have to take it easy. I don't do much because I get easily injured. And then I have the pain for the next 2 months or so.

I just wait till it is time to sleep again and maybe the coming night is better. Tomorrow I hope to do some chores. Today is a little boring.

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sunnylou

Hi Melissa,

        Hope you got some sleep last night, and that today is a bit more brighter & busyer for you!  How is your nerve and burning pain? Can you walk a bit better today?

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Melissa5000

I slept quite well. But woke up with painfull arms. My hands are very sensitive. My calves are very stiff. 

 

How are you today?

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sunnylou

Not too bad, being really gentle on self in the hope everything improves. Didn't have the burning this morning, and haven't given my leg reason to start ( done as least as loxsible), but life can't always be so gentle.

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Melissa5000

I am happy your burning wasn't there this morning! I expect it will stay away more often now.

 

The burning on my skin has improved a lot. But not the burning nervepain in my hands and fingers/toes.

 

The  storm of nervepain through my body is still there but it is less intense now. A nice improvement from the updose. 

 

Ik cycled 6 kilometer today. I had to go to the pharmarcy and the grocery store. It was ok during my trip. But when I came home my right hand and arm hurt a lot and I had to cry. I was too emotional over nothing. My central nervous system was overstimulated and very sensitive. Now I have been sitting a lot. I feel a little better now. 

 

 

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Melissa5000

Tonight I went for a small walk. I walked 700 meter. It was so good to be outside in the fresh air. I walked very slowly and I took short steps. It took me 12 minutes. But when I came home I felt the storm of nervepain. It stayed for around 90 minutes and it is still there a bit. My legs hurt and I have musclepain in my legs from it.

 

Walking is still very challenging for me. But I was so fed up with sitting in the house I needed to go outside and try to walk a bit. Now I am recovering from it..........

My arms still hurt. 

 

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Melissa5000

I woke up with a painful right hand and arm. I feel the storm of nervepain through my body since I woke up and started to walk to the bathroom. It stays all day. I have musclepain on my sternum. I feel al little nauseous and can't think clear or concentrate when the storm of nervepain is too bad. 

 

I dreamt about comming late at the dentist, I had to hurry up all the time. 

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Melissa5000

Last night I slept very well. Today I was mowing the lawn. My hands arms and figers hurt from it. And my feet were sore and my toes felt very sensitive.

I'm happy that the chore is done! 

 

Physical effort and movement like walking or cycling trigger symptoms. 

 

My cns would be better off if I was sitting stil all day or sleeping. But that is impossible!

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Carmie
14 hours ago, Melissa5000 said:

Last night I slept very well. Today I was mowing the lawn. My hands arms and figers hurt from it. And my feet were sore and my toes felt very sensitive.

I'm happy that the chore is done! 

 

Physical effort and movement like walking or cycling trigger symptoms. 

 

My cns would be better off if I was sitting stil all day or sleeping. But that is impossible!

 

Glad you got a good sleep Melissa, 

 

Yes, too much activity can certainly ramp up our symptoms. Lawn mowing sounds strenuous, maybe you could get a family member or friend to do it? Or if you have to do it maybe do less for the rest of the day. 

 

We really need to find balance in everything we do in this journey, not always easy but we can do it. We might just have to move things around in our schedule. Life is constantly changing so I find I have to constantly change with it. 

 

Im really sorry you are in so much pain, there are so many different symptoms when one tapers. I hope you end up getting a window soon from the pain. 

 

Sending hugs🤗

 

 

 

 

 

 

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Melissa5000

Thank you for your reply Carmie.

 

I try to do as less a possible. But sometimes a chore has to be done. I live alone. I have a boyfriend but he lives a few hours driving away. 

I walk behind schedule in the household. 

 

Today I woke up with painfull arms. I'm doing my laundry. My arms and hands hurt. And I feel a storm of nervepain through my body.

 

I'm at 125 mg lyrica now and 9 beads amitriptyline (2 mg).

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Carmie
8 hours ago, Melissa5000 said:

Thank you for your reply Carmie.

 

I try to do as less a possible. But sometimes a chore has to be done. I live alone. I have a boyfriend but he lives a few hours driving away. 

I walk behind schedule in the household. 

 

Today I woke up with painfull arms. I'm doing my laundry. My arms and hands hurt. And I feel a storm of nervepain through my body.

 

I'm at 125 mg lyrica now and 9 beads amitriptyline (2 mg).

 

Hi Melissa, 

 

Yes, there’s certainly chores and things we can’t avoid doing. Wouldn’t it be good if we could afford a cleaner? I’m so sorry about the pain, it must make it hard to do anything. Good for you though for not overdoing it, being balanced is the way to go. My home is clean and fairly neat but I’m not a perfectionist, some things can always wait. I don’t have a yard though, do you have a kind friend that might be able to do the mowing for you?

 

I’m really ill with a chronic illness and in bad days I lie down for most of the day, but then get up every now n then and do housework. I’m not in pain like you are though, that would be horrible. I have been in chronic pain in the past and that’s what landed me here with meds and the horror of withdrawals. 

 

Take care💚

 

 

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Melissa5000

I'm so sorry you have a chronic illness! Spreading tasks over the day is best. 

 

I do everything slowly and in between I take breaks and I sit down. I mow the lawn in 3 pieces. In between I sit down and rest. 

In that way I can just manage it. Afterwards my cns ramps up and then the nervepain comes. But I get nervepain even when I walk from the kitchen to my couch! So it is there anyway.

 

When I do some modest chores it may hurt but it also lifts my mood. 

 

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Melissa5000

Last night I slept well. I did the laundry and some cleaning upstairs. In between I took sitting breaks and I did a meditation exercise. 

I did some mild yoga stretching, guided meditation with a dvd, and tonight I cycled 10 minutes on a hometrainer 13 km/h. (very slowly).

 

Today has been a reasonable day for me. I am happy with it.

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Carmie
On 6/17/2018 at 9:42 AM, Melissa5000 said:

I'm so sorry you have a chronic illness! Spreading tasks over the day is best. 

 

I do everything slowly and in between I take breaks and I sit down. I mow the lawn in 3 pieces. In between I sit down and rest. 

In that way I can just manage it. Afterwards my cns ramps up and then the nervepain comes. But I get nervepain even when I walk from the kitchen to my couch! So it is there anyway.

 

When I do some modest chores it may hurt but it also lifts my mood. 

 

 

Hi Melissa, 

 

Glad you had a reasonable day today. Looks like you got a few things done with your rest breaks in between. That would have lifted your mood. Sorry you’re in so much pain.

 

I’ve been in bed all day but I’ve gotten up occasionally to do a little housework. Not heaps, but some. I’m a bit of a declutterer and find the less one owns the less one has to organise and clean. My home is cozy though with things I love, I can’t see the point in keeping stuff I don’t use though. 

 

If I haven’t worn something in ages I give it to a friend. Stayed with a friend a few weekends ago and she had three big cupboards full of clothes. That would drive me insane!😀

 

Take care xx

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Melissa5000

Hi Carmie, I should declutter too. But I don't have the energy for that now. 

 

I cycled 6 kilometers for groceries. I did some cleaning. And I did some meditation, mild yoga stretches and tonight I cycled 10 minutes on the hometrainer. My arms and hands hurt. (as usual).

 

Every now and then I watch the world championship soccer to distract myself. Unfortunately the Dutch team didn't make it to the world championship.

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Melissa5000

Today I did some cleaning spread over the day. My right hand and arm still hurt a lot. 

Not much news. 

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Melissa5000

Tonight I cycled 5 km on my hometrainer (20 minutes).  My calves were stiff but no further problems. 

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sunnylou

Wishing you strength, and healing. You deserve to get better. I hope one day soon your burning, and nerve pain will be gone. Your messages, and encouragement have kept me going these past few weeks. Even though you have such intense symptoms yourself to contend with.

 

Please if anyone reads this who has been in the same predicament, burning & nerve pain from trying to stabilize after tapering Lyrica please let Melissa know how your healing went. It would be very encouraging for her.

 

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Melissa5000

Thank you Sunnylou for your encouranging post!

 

Last night I couldnt sleep, restless. Only some wild dreams.  So today my pain is much more intense. I cycled to the dentist and the supermarket. (6 km)

 

Now I am home and I have to let my arms and hands rest and sit down. 

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Melissa5000

Last night I slept al little better. But all my muscles got tensioned in my sleep. I dreamt again troubled. 

 

Today I cleaned a bit and did the laundry. I am allready tired from it. Sore arms and hands, legs and feet now. So I'm sitting again. 

 

I get dizzy/confused when I move too much. When I sit down for a moment this dissappears again. 

 

My cns can't handle moving or physical effort. 

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Melissa5000

Today I do some housekeeping. Very gentle with breaks. I do every day some modest tasks if I can. This way I keep my house pretty neat.

 

My right arm and hand hurt. My left lower leg sometimes cramps while walking. 

 

I take it easy.

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Carmie
On 6/19/2018 at 6:55 AM, Melissa5000 said:

Hi Carmie, I should declutter too. But I don't have the energy for that now. 

 

I cycled 6 kilometers for groceries. I did some cleaning. And I did some meditation, mild yoga stretches and tonight I cycled 10 minutes on the hometrainer. My arms and hands hurt. (as usual).

 

Every now and then I watch the world championship soccer to distract myself. Unfortunately the Dutch team didn't make it to the world championship.

 

Glad you’re doing a little decluttering Melissa,

 

 Don’t overwhelm yourself. You know a great way to do it is to set the timer each day for ten minutes or so and just get rid of stuff. Throw away stuff and if it’s too good give it away. Ten minutes a day really adds up over the long run. 

 

I find a decluttered place makes it much easier easier to cope when in withdrawals because less stuff means less organising and less housework. Wow! Six kms of cycling. I couldn’t do half a km with CFS, I would collapse. Don’t overdo it though as it will ramp up your nervous system. Lots of people find too much exercise makes withdrawals worse, though one person on this site said it actually helped. We are all so different, but I see the majority of people find it adds too much stress. I guess it’s all about balance.

 

Im sorry you’re still in so much pain. One of these days you will finally be in a massive window and it will lessen. I’m amazed at the millions of different symptoms everyone has here from withdrawals. They are so vast. 

 

Glad the soccer game distracted you. We all need those distractions. 

13 hours ago, Melissa5000 said:

Today I do some housekeeping. Very gentle with breaks. I do every day some modest tasks if I can. This way I keep my house pretty neat.

 

My right arm and hand hurt. My left lower leg sometimes cramps while walking. 

 

I take it easy.

 

Looks like you’re keeping very balanced with your housework. I’m the same, a littlehere, a little there. It all adds up and keeps our houses neat. I’m not a perfectionist at all but my place is always visitor friendly. 

 

Sending hugs🤗

 

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