Melissa5000: nerve/muscle pain/burning after fast taper

[Melissa5000]

My muscle and nervepain is still going up and down. 

Sleep is also very important. 

 

Yesterday I had a good day after a good night of sleep. I decided to try my old regular bike again instead of my ebike.

I managed to cycle 1 mile. It was not easy and I only rode the bike at around 10 km/hour. Very slowly. But I managed it! I am so proud. After the ride my arms hurt.

My arms are my weakest point.

 

Last night it was very hot in my bedroom so I did not sleep as good as yesterday night. I immediatelly notice more aches and pains today.

 

I'll take it easy to get through the day.  

 

 

[Melissa5000]

Lately I had a few horrible days. The cause was in a few occeasions lack of sleep and the other time was during my period. If anything else besides withdrawal happens then I will have a setback and lots of extra pain.

 

But when I get a good night sleep and nothing else happens like: the flue, a cold, my period, a surgery and so on, the the day is most of the time quite bearable.

 

On a good day I can work 6 hours at the computer, but the typing is very slowly. I can do a few chores like the laundry, cleaning or gardening. On a good day I can walk around 4 or 5 kilometer. Or cycle 5 kilometer on a regular bike. 

 

A few days ago I decided to switch off the power of my ebike and cycle through the aquaduct wich is very steep! I managed to cycle back up the steep hill at a slow speed of 7 km an hour. For people around me it must have looked ridiculously!

But I was so gratefull that I managed it! After it I managed to cycle 2 extra kilometers without the power. But then I suddenly got very tired. My ebike was loaded with groceries. I had to switch the power back on. 

 

My sleep rythm was very disturbed. I went in bed too late and I got up very late. It was horrible. I decided to set the alarm clock. I get out of bed a lot earlier now. I will train myself to get up around 7.30 every day. I hoop that a good sleep pattern will make sure I get more hours of good quality sleep. Sleep helps a lot for pain. 

[composter]

Hi Melissa have you made any recent reductions or are you still holding?

 

It’s very true that changes to your routine like lack of sleep can exacerbate withdrawal symptoms. It’ll be good to focus on a good sleep schedule as you mentioned. Wish you the best and hope it’s not a big setback!

[Melissa5000]

Thank you for your support!

 

After a night of bad sleep the day after will be in more pain. I'll have to get through that day and I can't do much but sitting and reading or watching tv. But that is just one day.

 

I am still holding. Tapering even a microdose would make me bedridden. Not  worth it. 

 

Last night I went to bed early. My sleep was a bit crampy and not as good as expected. 

This norning I discovered that The night time liquid was still in a cup beside mt bed. I forgot to drink it. So I missed a dose. Now I feel more pain. I did drink the morning dose. But there will be less medication in my blood today which will cause trouble and more pain. So another lost day. So sad. 

[Melissa5000]

I love my new sleep pattern. I am in bed now between 23.00 and 7.30 hour.

 

My weight loss is progressing. I am down from 100 kilo to 74 kilo now. People start to see it. But I am doing this just to get healthy.

 

I have a lot of muscle tension in my entire back and ribcage for 5 days now. The pain is often travelling. My shoulders and arms are still sensitive for pain.

 

I had 3 lovely days with my boyfriend. The hot weather of the last days made me slow and apathetic and less active. The last few days I went for walks again. Only in the evening because of sun allegy from the meds. Many flowers died half because of the hot weather. I put lots of new flowers in my garden. It looks so beautifull now! 

 

 

 

 

[Hanna72]

Hi @Melissa5000

1 hour ago, Melissa5000 said:

 

I love my new sleep pattern. I am in bed now between 23.00 and 7.30 hour.

 

My weight loss is progressing. I am down from 100 kilo to 74 kilo now. People start to see it. But I am doing this just to get healthy.

 

Well done and thank you for sharing. You are on your way on taking good care of your health. 
Really happy for you 🙏
One day at a time and positive things add up little by little.
 

[Erell]

2 hours ago, Melissa5000 said:

I love my new sleep pattern. I am in bed now between 23.00 and 7.30 hour.

 

Indeed, it sounds lovely 🤗

 

And going out for walks is great  ! Walking really can soothe our CNS.

 

Flowers seem to be ok in my garden, but vegetables are screaming for water. 

Good news is it raining today!

 

Take care ☀️

 

[Melissa5000]

Thank you Hanna and Erell for your support! 

 

I feel quite ok at the moment. Still in big withdrawal but I have some improvements here and there compared to a year ago.

 

Lately I had a few old symptoms coming back. They dissapeared after around a week: muscle tension in back and ribcage in my sleep, dizzyness, sleeping legs after sitting on the toilet, nervepain in my fingers.

 

When I had pms and my period I had a huge setback for a week: much more nervepain, musclepain, bad sleep, cryingspells, bad mental concentration and feeling more disabled. 

In the 3 weeks when I am not on my period I feel much stronger. I have more energy and I sleep better.

 

I notice I can work a little longer in the garden. I can do a few more chores in the housekeeping on a good day. 

I dream about a small parttime job. But on a bad day or on my period I know I could not do the job. So I would lose the job again. It is sad. But it is a smarter plan to wait untill I improve a bit more. 

I keep working from home freelance.

 

Even in september my garden is filled with flowers. I am so gratefull for that!

 

The gym closed in march because of covid 19. It is reopened in july. But I was too afraid to go because of the virus. But I missed it so much that I went yesterday. You have to make a reservation and they only let in  a limited amount of people. 

Only half of the equipment is used so there is lots of space between people. I can clean the treadmill before and after I use it and the employees are cleaning constantly. It felt very safe. I walked 5 k/m per hour and 4 times I went even jogging for a very short period!

After that I cycled on ad hometrainer. I noticed that I could do a heavier training than the last time I went! I tried the crosstrainer for only one minute. But that was too heavy for me. Now I have musclepain. But that is normal! I did not go to the gym for a very long time. I am sooooo happy that I went to the gym! Now I feel confident to go more often in despite of covid 19. It felt clean and safe. 

 

I lost even more weight. I am now down to 72 kilo (from 100 kilo).

 

[Melissa5000]

In september I saw many remote jobs from home because of the corona. I was longing for a job for a very long time but I could not do it because of nervepain in my arms/hands and face/jaw area.

 

I wanted it so much that I finally applied. It was very stressfull and I was very afraid to fail.

 

I decided to change the med scheme. Now I take 75 mg lyrica just before I start to work. The rest of the day I have less medication left so I suffer more aches, pains and nervepain.

BUT this way I could work parttime! I have worked 5 weeks as a call center agent from home now for 20 - 24 hours a week. 

 

I am very happy!!!!!!!

 

I dream about working more hours allready! 😀 But I doubt it if that would be such a good idea......... I could use the extra income for sure.  I am just very unsure if my body would be able to do that! 

 

Getting up very early is hard on my CNS. I used to stay in bed for 9 - 10 hours a night to catch around 8 hours of sleep. Now I stay in bed for only 8,5 hours a night. I miss some sleep now. 

It takes time for my body to adjust to a regular job again! 

 

But I am so gratefull to have a job again! I meet my colleagues in Zoom and on Whatsapp and I speak to many people every day. This is more stimulation for my brain in a good way.

I don't have to spend my energy on travelling, that saves time!

 

Often my face/jaw hurts,  and my arms and when I am tired I miss a few words here and there and my concentration is a bit worse....... But I hope by  just keep doing the job that my body and brain will adjust over time. Who knows! 

 

I deeply hope I can keep the job! It means a lot for me. 

 

It is allready halfway november and I have still some flowers in my garden. The sun allergy is not a problem now because the UV strength is so low now. It is mostly cloude weather. 

But I was even able to walk in the sunny weather outside. I went for a 5 km walk in the forest with my boyfriend.

 

My weight is now down to 69 kg (from 100 kg). My health is slowly improving. I have a healthy BMI now! 

[Melissa5000]

I still have my new parttime callcenter job from home! I am so happy with that!

 

Lately I have a lot of shoulder pain and pain in my left upper arm. I have a new tense machine for my shoulders from the hospital. Self massage helps too. But the shoulders are still stiff. I try qi gong for it. And rest will help. And above all I expect that lots of time will help. 

 

My weight is down to 68 kg. It looks and feels perfectly now! 

 

I have yellow rudbeckia flowers in my garden and a few more. Flowers in december. I cherish my garden!

 

I am feeding birds so they come into my garden. It is lovely to see the birds from so close.

 

I am still struggling a lot. I do my best. I have to wait and see what happens....

 

Happy new year to everybody!

[Machi]

Dear Melissa, 
Happy New Year🌅 Wishing you very happy and painless 2021! 
I refrain from posting myself because I'm a caregiver.

But your posts have been always encouraging for me to read and I'd like to thank you and to praise yourself controlling endeavour. You ARE just amazing❣️ 

We have two yellow rose buds in December here as wel🌹l! Other flowers are still in the garden. These flowers are mostly cared by my husband to be seen from TK's bedroom. 

He's still in bed mostly due to the pains. But his Circadian rhythm, apatite, stable psychological condition etc. are all back after 20 month cessation of all meds. He's started to watch Dan Neuffer's program from Yesterday.  

Again, Thank you for keeping your posts😊.  

[Melissa5000]

Hello Machi! Thank you for stopping by!

 

I did Dan Neuffers programme too! It helps a bit but recovery is still very slowly. It was not a magic trick for me to recover quicker. It does help to stay more positive and keept the faith though. 

 

It helps for me to try to live as normal as possible. I am still suffering lots of pain so life is far from normal. But it helps to try to do normal things that I would do if I did not suffer extreme nervepains. On a good day I can do a chore in the housekeeping, do some gardening or go groceryshopping on my ebike. Now I even work parttime from home! I just try to rebuild my life in babysteps. But it goes with big setbacks here and there. That is normal too. Whenever I try to do something, even a small effort, there is a risk of overdoing it. One day it is no problem and the next day the same effort can cause a feeling of a big painfull injury that stays for weeks or months. But without trying there would be no progress. It is important to keep stimulating the body and brain, even on the modest level. 

 

It helps to realise that the pains, symptoms and setbacks are because of withdrawal and that it will get better with lots of time. 

One big lesson I learned from this withdrawal is patience! 

 

I hope TK will recover soon!

[Melissa5000]

I have not been here for a while.

 

I was very busy with my new callcenter job. But I had also difficulties. Since I started the job my pains increased. Over time it got slightly worse and worse.

I ended up with 2 frozen shoulders and I suffered so much pain that I could not work anymore. I could not even put on a long sleeved sweater or coat without much pain.

 

I suppose my body is still very sensitive and that I get injured a lot quicker than before I had these problems.

 

The company ended my contract at the end of july. I worked there for 10 months.  I visited a physical therapist and a chiropractor. Thanks to their help my frozen shoulders are 75% recovered. The rest of the recovery will take over a year. But I can do most things in daily life again. I am grateful for that.

 

So I cannot work for a bos at the moment. My body needs to work slower with more breaks. If I would work in an office job the employer would want me to work fast, be constantly active in typing and on the phone. My body can type slowly with many breaks, but not at a fast speed. I can do phonecalls but not constantly for 8 hours a day.

 Employers don't want me in this shape.

 

So now I am my own boss. I work from home online or on the phone. But now I can decide how much I work and how long I sit at my desk and when I take a break. I spread the work over the day. I can't work many paid hours but it is till enough for me to make a modest living. That is what counts! In the mean time my body can recover. 

 

I don't regret that I tried a regular job. I enjoyed it a lot! But it was probably too soon for me. Now I at least know that and I don't have to wonder anymore. 

I still enjoy life. I stay mindfull.