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Melissa5000

Melissa5000: nerve/muscle pain/burning after fast taper

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Melissa5000

I really hope to see some improvements in the near future. It is now 3 months ago that I made my last changes. I hope that keeping my meds like this for a longer time will give my body a chance to make improvements. I can't wait to see some improvements!!!

 

I'm having my peiod now for 7 days. It is exhausting me. My pain gets more intense when I get my period of course. Now I get my period by nature every 4th week. When I was on the pil I planned my period every 6th week. That was a lot better. Now I get it more often. 

 

Last night I spent many hours in bed but I couldn't sleep deeply. I woke up a lot and had to pee. So My sleep wasn't that good. I changed the bed sheets and did the laundry. I did some cleaning and decluttering. I try to take it easy. Maybe I'll be a bit better when my period is over in a few days. 

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Melissa5000

I had a few bad days. My sleep was bad and in the daytime I suffered extra pain. On top of that I missed a dose one day. I had a few days extra pain because of the missed dose.

 

Last night my sleep was ok. My period is finally over. I hope to recover a little bit in the next few days. Today my fingers and arms hurt so I have to be extra careful. 

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Melissa5000

Last night I slept 7 hours. I was weeding the front yard. It was a lot of work. There was growing ivy through the hedge. I've been removing that as well. And I pruned a little here and there. Now my toes hurt from crouching. (nervepain). Moving and exercise still hurt me. It limits my activity a lot. Now I'm resting for the rest of the day. My energy is used up for the day. 

 

But I'm so happy that the task is done! I'm relieved. The last few days I felt so weak and had too much pain to even think about gardening. Now that I was able to do a bigger chore again I feel a lot better. 

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Melissa5000

Yesterday I was at a big family birthdayparty. It was a nice time. Today I mowed the lawn and did some gardening. I did the laundry. 

My right hand feels burning. I can't do much. My hand really hurts.  I think I have a bladder infection. I drink lots of water and take cranberry capsules for it. I hope it will clear up soon. 

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Melissa5000

i still have the bladder infection. I keep on drinking lots of water and taking cranberry capsules. 

 

I slept 8,5 hours. I cycled 11 kilometer on my ebike for groceries and I visited two shops. After dinner I had to sit down. The day was ok. My right hand still hurts.

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Melissa5000

Last night I slept 9 hours. My right hand and arm hurts.

I did lots of laundry and folding.

 

I wonder if my pain will ever fade!

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India

I'm sorry to hear of your pain. It is cruel to have to experience it . I find warm baths with magnesium and lavender oil help a little. I know everyone's pain is different and responds to different things. Does massage help? I find massage helps me a lot. 

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India

Also, have you thought of gentle swimming? I know I used to over exercise and I was told I had stressed by system. Obviously, it's a subjective matter. It's whatever makes you feel good. I know some ppl who swear by gentle yoga for nerve pain. I find sauna and steam

rooms help also. 

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Melissa5000

Hello India, thanks for your support!

 

I don't have a bath tub unfortunatelly but I take magnesium supplements every day and I have magnesium oil that I can rub on sore muscles like my calves. 

 

When I'm really deeply burning massage makes it worse. But I massage every day a few triggerpoints in my neck and shoulders. That helps for face ache. And those triggerpoints can help relieve a little arm pain. But only a little. 

 

I have to travel an hour to the closest pool. Then I'll be exhausted when I get there. I'll be too tired for swimming then. I don't sport at all and I really regret that. But standing and walking and housekeeping tire me allready out after 15 minutes.

 

I tried some mild yoga but then after it I used my energy up for the rest of the day. I could not do chores anymore like coocking or decluttering or do the dishes. But as soon as I get a little bit better I would love to try yoga again.  

 

In my city we don't have a sauna but I was in a sauna a few years ago. I know it is recommended for chronic pain. I would like that a lot!

 

Just sitting and relaxing with a cup of herbal tea is helping me to relax. And also guided meditations. And distraction when I have pain is helpful too. As long as I'm physically not busy it is helpful. 

 

*************

 

Last night I slept in 2 etappes. In between I was awake for a few hours. Roadworkers woke me up. I went to the supermarket. Did some cleaning and decluttering. Now I have to rest again. My hands and arms hurt again. 

 

I would love to have a proper job again. But unfortunatelly I really can't! I can hardly type or walk or use my hands. I'm most of the time housebound or in the garden. 

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Melissa5000

 

Last night I slept in 2 etappes again. I stayed in bed for a very long time to rest. I had muscle pain in my back from laying in bed. Now when I am up it is better. I still have pain in my hands and arms. 

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Melissa5000

 

I had a good time with my boyfriend. We were going out on sunday night and monday we just sat on a bench in the sun wearing summer clothes half october! Sunday we went to a lighting store and bought a few new lamps as it gets earlier darker again. In the evening he was tired and I had nervepain so we just watched tv. 

 

Today I cycled to the hospital on my ebike and I went to a drugstore. I think I cycled 7 km from home. I haven't been able to travel that long without the bus in more than a year! That ebike is awesome! :D

 

I have many aches and pains because I didn't sleep a lot. Workmen woke me up very early. The housing association had ordered to repave the garden path. They did my garden this morning and my neighbours so it was very noisy. 

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Melissa5000

 

Last night my sleep was ok. My right hand and arm hurt a lot. I didn't do much. Just some laundry and watching tv and reading. 

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Melissa5000

 

Last night I slept 9 hours! My right hand and fingers hurt. I can't do much.  Just some laundry and watching tv and reading again. Boring! 

I have a bit of a cold and a sore throat. 

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Melissa5000

This evening I went for a small walk. I walked 1400 meter. It was nice to be outside with the autumn leaves. Now I feel it in my feet and legs. Just very tired. I have to sit down and relax with a cup of tea now!

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Melissa5000

Last night I slept 7 hours. My right hand and arm hurt. I did some laundry and washed the windows outside. After it I had to sit down! My hands, arms, legs and feet hurt.

 

My activity is still very limited. Will this ever improve? It is over for months after my last updose..................

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Gridley

It will improve.  It can sometimes take more than four months to stabilize.  I would just keep holding.  You can't see it but you are healing inside while you hold.  I just imagine those decommissioned neurotransmitters slowly reactivating while you hold.  

 

 It's great you got 7 hours sleep last night!

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Melissa5000

Thank you very much for your answer Gridley! I just needed to hear that.

 

Sometimes I get so unsure. I don't see any improvements yet since my last updose. When I read that others notice improvements looking back and I don't, then I get confused and dissapointed and afraid I will never heal. It's not funny to be in withdrawal. I just wait and survive. I don't fully live anymore. It feels like living with the handbrake on. I hope to see some improvements soon! I really need them!

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Melissa5000

I have a bad cold. Last night I laid in bed from 22.00 to 12.00. I could not sleep because I was blowing my nose all the time!

 

Today we celebrated my moms 70th birthday. We went to a restaurant with the entire family. 

 

No I'm pretty tired and watch tv. 

 

Edited by ChessieCat
correct typo as per follow up post by member

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Melissa5000

 

Last night I slept bad again because of the cold. I'm sneezing and blowing my nose all the time. My right hand burns all day. I hope tomorrow will be better!

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Melissa5000

Last night I slept 8 hours. Had to go to my pain specialist in the hospital. I did not change my meds. I cycled 14 km on my ebike  and visited a few shops. Now my right hand hurts. I'm tired. 

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Carmie
1 hour ago, Melissa5000 said:

Last night I slept 8 hours. Had to go to my pain specialist in the hospital. I did not change my meds. I cycled 14 km on my ebike  and visited a few shops. Now my right hand hurts. I'm tired. 

Hi Melissa, 

 

Im so sorry your pain doesn’t seem to get any better. That must be so hard for you, especially with your gardening n everything. 

 

I was looking at your signature again n I’m so sorry it started when you cold turkeyed a while back. If only doctors warned us about these meds n also told us how to taper correctly. 

 

I hope the pain specialist was of some help.

 

Sending hugs🤗

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Melissa5000

Hello Carmie, thank you for your support. Unfortunatelly my painspecialist didn't know what to do. She gave me a recipe for generic amitriptyline 10 mg. I needed that for just in case I run out of beads Sarotex Retard amitriptyline. I seem to get sun allergy from generic amitriptyline, so I hope I can taper off those beads before I run out. But just in case I can't taper them quick enough I can step over to the generic to prevent that I have to jump off them suddenly because my supply runs out. 

 

I am attending now a course in the hospital about pain education. They promise that we pain patients can lower the pain over time. I'm still trying graded activity. I hope some day I notice improvements! I see many videos on youtube of people who got rid of their chronic pain. So there must be some hope for me too. It is just not always easy. After the first improvements I would be relieved. 

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Melissa5000

Today I did lots of laundry and decluttering. I slept 6-7 hours. My right hand is burning all day. After dinner I had to sit down again. Boring, very boring. But I'm happy I could do some chores. The cold is getting better. 

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Melissa5000

Last night I slept 6,5 hours. I feel tired. I have cleaned the bathroom and the toilet and I have been mopping the floors. 

 

Now I have to sit down again and take it easy. My arms and hands hurt, my feet hurt and my toes burn. 

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Melissa5000

Last night I hardly slept. So now I feel tired and the lack of sleep makes my body very sensitive for pain. I feel a little sad and have cryingspells. 

 

 

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Melissa5000

Last night I slept 10 hours. When I woke up I felt tired and sensitive for pain. I was having cryingspells, was a bit chaotic and forgetfull.  I was crying because I am afraid I never will heal. And that the brand lyrica goes off the market. I get sunallergy from the generic. And I can't stop the lyrica all of a sudden! So that wil lead to years of living in the dark with sunallergy. I can't taper now. I tried it in february this year. I had to do a big updose. And now I'm even worse off. That is my biggest fear now. When I think of it I get cryingspells. 

 

I hope I'll stabilise one day. And I hope I can taper the Lyrica before the A-brand Lyrica goes off the market. 

 

I mowed the lawn, did chores in the garden. I coocked, and did some cleaning. Now I'm tired and have to sit the rest of the day. 

My arms and hands and legs hurt. My neck- and shouldermuscles hurt too. Sad isn't it?

 

 

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Melissa5000

Yesterday I had the pain education in the hospital. It was nice to meet other pain patients. After it I had the flue shot.

 

Last night I slept too short 5 hours. So today I had extra pain unfortunatelly. I went grocery shopping and did a little cleaning. 

 

 

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Melissa5000

Last night I slept 8 hours.

 

I did lots of laundry. All the tiny daily chores tire me out. 

 

My arms and hands hurt. (as usual) I have cramps in my feet and legs and my buttmuscles hurt!!! I wonder what I could have done to hurt my butt! Maybe cycling  a lot on tuesday or standing in line for the flueshot on tuesday evening? I have difficulties when I have to stand a bit longer. 

 

 

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Melissa5000

Last night I slept 7 hours.

I have burning hands and low back and butt pain. I did gentle exercise for the low back. That felt ok. 

 

I'm at home and I try to alternate between sitting and standing. 

 

 

 

 

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Melissa5000

Today I had a long journey. I traveled in one bus and 3 trains. I traveled for over 2,5 hours. It was a long trip.  I am so glad that I arrived at his apartement! 

 

It was very difficult for me to walk and walk stairs at the train stations. Now my low back and butt and hamstrings hurt. And my hands and arms burn as usual. 

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Melissa5000

I went to my boyfriend his apartement. ☺️

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Melissa5000

Saturday night I could not sleep in the apartement of my boyfriend. It was noisy and the daylight woke me up early, On sunday I went back home. I had a lot of pain. But above all I was very tired.

 

Last night I slept very well. I feel a lot better. I have everywhere a few aches and pains now.

 

 

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Melissa5000

I have been busy buying presents for a Dutch Sinterklaas party. (5th december)

And I bought presents for my boyfriend's birthday. And I had to replace some garden equipment. 

 

I was yesterday in the hospital. The pain education is a lot about stopping negative thoughts and replacing them for positive thoughts. In the long run this should help to reduce the pain over time with little steps.  I know I worry and ruminate a lot. And I should try to stop the negative thoughts and think of a positive outcome instead. They also recommend graded activity. And we have to set a goal and immediatelly after it reward ourself with something small like a meditation or a cup of coffee, a sweet and so on. 

 

I have a lot of pain in my hamstrings now! Sometimes in my but too and sometimes even in my low back. 

I only slept 6 hours in the last 2 nights. 

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Melissa5000

Last night I slept 7 hours. I had to wait for the postman to deliver a new hedge trimmer. After he brought me the trimmer I immediatelly used it to prune the hedge in the front garden. I made the hedge a little bit shorter. Now I'm done before the winter. 

 

After it I went on my ebike to the hairdresser. Now that my hair is falling out a lot after quitting the birthcontrol pil Diane 35, my hair is getting thinner. I let the hairdresser cut my hair to just over the shoulders. It looks a lot better now. I let her cut off around 12 centimeter.

 

My arms hurt a little bit, so I have to let them rest now. I try not to worry anymore. Worrying and rumunating can trigger the fight and flight response and so it can trigger the chronic pain alarm. That is what they teach me in  the hospital at the pain edcucation course. I have to alternate between standing and sitting for the pain in my hamstrings, butt and low back. Musclepain is very common in withdrawal. I'm not too bothered by it.

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ChessieCat

Sounds like you are doing okay considering everything.  It's good that you are learning and using non drug ways to cope.

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Melissa5000

Yes I prefer non drug techniques now ChessieCat! One day is better than the other. I'm still very handicapped. But I try everything to make the best of it and I hope to see some improvements in the near future. 

 

Last night I slept 8 hours.

 

 

Today I went grocery shopping with my boyfriend. We are puzzling on a puzzle of 1000 pieces. :D We watched formule 1 on tv. Tonight it is Sint Maarten. Children with lampions are singing from door to door. We give them candy. I have been a lot on my feet in the store, coocking and cleaning and walking to the front door all the time for the children. Now my hands are burning and my feet and legs hurt. So I have to sit down and rest now. I have some face ache too. Now I don't ruminate about it anymore. It is what it is. Now I think: the pain will fade away!

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