Jump to content
Melissa5000

Melissa5000: nerve/muscle pain/burning after fast taper

Recommended Posts

ChessieCat
4 hours ago, Melissa5000 said:

We are puzzling on a puzzle of 1000 pieces. 

 

Only 1000 pieces?  Some days it feels like a lot more, 5000?

 

4 hours ago, Melissa5000 said:

Now I don't ruminate about it anymore. It is what it is. Now I think: the pain will fade away!

 

That is good.

 

On 4/28/2017 at 4:03 AM, brassmonkey said:

 

AAF: Acknowledge, Accept, Float.  It's what you have to do when nothing else works, and can be a very powerful tool in coping with anxiety.  The neuroemotional anxiety many of us feel during WD is directly caused by the drugs and their chemical reactions in the brain.  Making it so there is nothing we can do about them.  They won't respond to other drugs, relaxation techniques and the like.  They do, however, react very well to being ignored.  That's the concept behind AAF.  Acknowledge, get to know the feeling involved, explore them.  Accept, These feelings are a part of you and they aren't going anywhere fast. Float, let the feeling float off as you get on with your life as best as you can.  It's a well documented fact that the more you feed in to anxiety the worse it gets.  What starts as generalized neuroemotinal anxiety can be easily blown into a full fledged panic attack just by thinking about it.

 

I often liken it to an unwanted house guest.  At first you talk to them, have conversations, communicate with them.  After a while you figure out that they aren't leaving and there is nothing you can do to get rid of them.  So you go on about your day, working around them until they get bored and leave.

 

It can take some practice, but AAF really does work.  I hope you give it a try.

 

 

Share this post


Link to post
Melissa5000

That AAF in Brassmonkey his quote sounds good! If it helps for anxiety it probably also works for pain or other symptoms. 

 

Thank you for posting this ChessieCat!

Share this post


Link to post
ChessieCat

You are welcome.  I think sometimes we use a non drug technique without realising that it is an actual technique.  Knowing that it is a real technique and maybe improving it can be helpful. 

Share this post


Link to post
Melissa5000

Thuesday I went to the hospital for the chronic pain course again. There was also a woman who told us her successtory. After 13 years of chronic pain she started to practise graded activity for walking, relaxation by meditation and breathing, yin yoga and mind body techniques. It took her 5 years to recover. I am happy that there is hope for chronic pain today. However I sufffer the same amount of pain I feel mentally a bit relieved now that the woman told us how she recovered after 13 years of chronic pain. It will take lots of time but it IS possible to overcome chronic pain!

 

Last night I only slept 6,5 hours. Tonight I went to a restaurant with friends. We had a very nice time. 

My fingers hurt a bit when I type. It is probably extra sensitive because of the lack of sleep. I had to walk to the restaurant but it went fine. 

 

Yesterday I practised my walking again. I walked 1600 meter. I was tired after it and my legs hurt but it went ok. 

 

 

Share this post


Link to post
Melissa5000

Last night I laid long in bed. I slept 8 hours. Good deep sleep. Since it is darker in the bedroom and since the workmen left a few weeks ago my sleep has improved a lot!

 

I did the laundry and went grocery shopping on my ebike. I watched soccer. I can't believe th Dutch team won from France!

I practise my typing. I have to type for 3 minutes without a break. It went ok.

 

Tonight I'm going to work on the jigsaw puzzle. It is a picture of a village in the snow with a big christmas tree. 

I have a little face ache and my hands are a bit painful. 

Share this post


Link to post
Melissa5000

Saturday night to Sunday I had a sleepless night. Sunday I was at  my boyfriend. We had a nice day. I spent 5,5 hours in the public transport. I had a day ticket for the train. He lives not around the corner. Sunday evening I was quite tired when I came home. 

 

Last night I slept very well. Over 8 hours!

 

My arms and hands are a bit more painful than usual. I blame it on travelling so much yesterday after a sleepless night.

So today I did some laundry and cooking. For the rest I take it easy.

 

Share this post


Link to post
Melissa5000

Monday to tuesday night I slept only 5 hours. I was a little nervous because I had to get up early.

 

Tuesday I went to the hospital for the chronic pain education again. It was fine.After it I went to a few stores on my ebike.

After it I was tired because of the lack of sleep. When I went to bed my right knee hurt.

 

This morning I doubted whether I just took 25 or 50 mg lyrica. I did not dare to take a second capsule lyrica. Two hours later I had more pain, felt moving nerves in my arms, really deep burning pain, I felt like crying, I felt anxious and suddenly was in great dispair. I burst out in tears a few times. Then I realised that I problably took just 25 mg lyrica this morning. So I added a second capsule. A few hours later I felt a little better. But I'm still not recovered. It scares me how much inpact it had when I missed just one pill. I wonder how I can ever start to taper again. And when? Any advice and experience about that?

 

 

 

 

 

 

 

Share this post


Link to post
Melissa5000

Since the lyrica incident yesterday I am still a bit more emotional. And my nerves in my limbs and body feel extra sensitive. I slept 7 hours last night. I did some laundry, decluttering and cooking and I cleaned the kitchen. For the rest I have to take it easy. I feel a bit better than yesterday. Yesterday I felt horrible both physically and mentally. I could not live in that situation. It remembered me of april/may this year when I was on only 75 mg lyrica. 

Share this post


Link to post
Melissa5000

Last night I slept 7 hours.

 

I went for groceries and to the pharmacy on my ebike. When I came home I felt a storm of nervepain in my body. My core and belly feel hotter than usual. I'm more emotional and feel like crying. I cried over nothing a few times. It feels like I have hunger pangs. But that is impossible because it stays the same just after dinner. I feel horrible. I wonder if I have a setback. 

 

Share this post


Link to post
Melissa5000

I have a setback now. I can hardly cope. I try to stay positive and find some distraction. I try the techniques they teach us in the hospital. I'm at my best when I lay still in bed and don't move. 

 

Yesterday I slept only 5 hours. I did some cleaning and laundry. I had pain everywhere. Also burning/irritated/itchy skin. I was very emotional. I tried to change my hopeless negative thoughts into positive thoughts. But I could not prevent to burst out into tears a few times.  It was painful when I touched my boyfriend or when he touched me.

 

Last night I slept over 8 hours. When I walk I feel my nerves moving and irritating. My skin is still feeling burning very quickly. I went to the supermarket with my boyfriend by car. Walking was hard and painful because of the irritated nerves. For the rest I have been sitting a lot to prevent more nervepain. 

 

I think this must be a wave!

 

Share this post


Link to post
Melissa5000

Yesterday I slept 8 hours. But I was very stressed. So I contracted all my muscles. In the evening I had pain everywhere and also a head ache! I decided to stop worrying. I took 2 paracetamol for my head ache and decided to relax. My pain improved a bit. My head ache went away. 

 

Last night I slept only 5 or 6 hours. So my nervepain is a little more intense today. I did a few chores in the house and some cleaning. I was happy that I was able do do them in despite of the pain. My arms and hands are still burning. Today I am mentally more stable. It helped when I decided to stop worrying. 

 

Share this post


Link to post
Melissa5000

Yesterday I slept 8 hours. But I was still very sensitive. I stayed inside all day and sat on a chair almost the entire day. I only did cooking, washing dishes and some laundry. 

 

Last night I slept over 9 hours. I was deeply asleep. I guess I needed it because pain takes a lot of energy. 

Today I did the laundry, cooking, and I got my fake christmas tree from the third floor. I had to go up and down the stairs for 4 times. I have to hang all the branches in the tree one by one. It takes some time. And I managed to hang the lights in the tree and I put a peak on top of the tree and hung silver and gold garlands in it. That was a big chore for me to do but I am so happy now! I have a lot of decoration for the tree in a big box. I'll decorate it later this evering and maybe a part tomorrow. I have to spread the tasks because of the pain. 

 

Now my arms and fingers  hurt a bit, I have itchy nerves in my arms and legs, my legs feel tired and my toes burn. I have to rest a bit now. 

 

Share this post


Link to post
Melissa5000

Yesterday I slept 7,5 hours. I went on my ebike to the hospital It was raining. I had a session with a psychologist for VR-glasses therapy.

I bought an Oculus GO 32 GB. The psychologist gave me a code for 3 games on it for painrelieve. This is still in a test stage. I tried the games. They give a lot of distraction. In between I hear the voice of the psychologist explan a few things about how the painsystem works for chronic pain. 

 

On the way back home it was raining very hard. It was fun to cycle in the rain again after a long quite dry season.

I was tired and had some more pain. The weight of the Oculus go pressed a lot on my face and pulled on my neck. Maybe I had the straps not in the right position yet. I have to explore the device a bit more. 

 

Last night I slept 7 hours. I have sore arms today. I went for groceries and cooked a healthy meal. I tried the VR games again. This time it went a bit better with the heavy device. I changed the straps of the Oculus Go. 

My fingers and arms hurt. I started writing the Christmas cards. 

 

I sit a lot. I am still sensitive for movement like walking and lifting things up. I am still in a wave. Maybe I am a little bit better now than in the beginning of this wave as long as I sit still. 

Share this post


Link to post
Melissa5000

Last night I slept over 9 hours. I did the laundry and some cleaning and cooking. I am happy with that. I started writing the christmas cards. My arms and hands hurt from the activity. Tonight I watched a few movies on tv. I'm still afraid of too much walking. I am afraid to trigger the storm of nervepain again. It is now a year ago that I quit the birthcontrol pil. I am still suffering the hairloss. My ponytail is very thin. And my hair is a lot shorter too. I had to cut it. Maybe withdrawal has also an influence on hairloss? It is relaxing to play the games from the hospital on my Oculus Go. 

Share this post


Link to post
Melissa5000

My buttock/hamstring/low back pain has gone for a few weeks now! I'm very happy with that. Lately I feel some cramps around my upper back and ribs. Sometimes it hurts when I take a deep breath. Just musclepain in a different part of my body. 

 

Last night I slept 8 hours. The last days my sleep is good and deep!

I did some dusting and cooking, washing dishes and decluttering. But I still have to sit and rest most of the time.

 

The VR games are nice to do. They give some distraction and relaxation. I don't notice an improvement in my pain level yet. But I have to play them a few more weeks I suppose before it starts working. 

Share this post


Link to post
Melissa5000

Last night I slept over 8 hours. I slept very deeply on my right side. I did not turn in my sleep so I woke up with musclepain on my right shoulder and upper back and right ribs.

 

Today I am quite tired. I sat the most of the day. My arms hurt a bit when I woke up. I watched lots of sports. Now I am reading a book. 

 

I only played one game on the Oculus Go. My neck hurt from the heavy device so I had to stop. 

Share this post


Link to post
Melissa5000

last night I slept 8 hours. But I am a lttle tired and weak. My period finally arrived. It came 2 weeks and 2 days late. I wonder if that wave I had messed up my menstrual cycle. The bad wave seems to be gone now. I feel more like my "wd normal" (as Brassmonkey says). 

 

Today I just did cooking and cleaning the kitchen. I have to take it easy as my period makes my withdrawal a bit worse as always. 

My arms and fingers hurt a little. It is dark, rainy and windy over here. A good momet to sit near the christmas tree. 

Share this post


Link to post
Melissa5000

Sunday I slept lighter and only 5 or 6 hours. I went with my parents to my sister and her family. We had a delayed Sinterklaas party where we bring some presents for her children. We were there all afternoon and we had dinner at my sister's. Sunday evening I was very tired. And I had more pain because of the lack of sleep and my period.

 

Monday I slept better around 8 hours. I went to the pharmacy, the supermarket and did the laundry and cooking. My arms hurt. After I sat down the entire evening my pain was improved a lot at bed time.

 

Last night I slept in 3 episodes all together 9 hours. I was really tired. I needed to stay in bed for some more sleep. Today I posted the christmas cards. I cooked and washed dishes. Now my arms hurt. So I sit down and rest. I am almost all day sitting or laying in bed. I am worried. This can't be good. I live the life of a 93 year old instead of a 43 year old! Evey now and then I walk around the living room to make sure the circulation of the blood is stimulated.  I would love to be more active. The problem is that when I start to be modestly a bit more active I get a storm of nervepain over my body and cryingspells will start! That state stays mostly always for the rest of the day. So on the one hand I want to prevent that. But on the other hand I would like to move around a bit more! I feel so trapped. 

 

For the next year the monthly energy bill wil go up with 40 euro. That is a lot for me as I can hardly pay my bills and the groceries today. 

Every year all the bills will go up a bit. So I need more income for the next year but in this handicapped state I can't have a normal job. So I worry about that a lot. 

Share this post


Link to post
Callie

Hi, Melissa5000:

 

Several days ago in my intro and update page, you had mentioned sleeves rub against your arms and hurt. I think you know that that is constant for me, too. Anyway, I bought a velour fabric top and wear it inside out. It doesn't irritate my skin too badly. It's rather tolerable. It also keeps me warm for the most part as I, too, am constantly cold.

 

I just figured I'd pass this info on to you in case you haven't tried it.

 

You take care now!

 

Callie

Share this post


Link to post
Melissa5000

Thank you very much Callie! Maybe that works for me too. For me jersey cotton long sleeve shirts work the best at the moment. And sitting stil al lot!

 

Last night I slept in 3 episodes around 8 hours. I woke up a few times. I did not sleep very deeply. But it was ok.

Today I managed to clean for an hour, did cooking, washing dishes and some laundry. I am happy with that.

 

Tonight I sit a lot. I walk around the living room every now and then. That is it. No movement unfortunatelly. I am afraid to trigger the state with all over body nervepain and cryingspells and fear and rumination and despair, feeling nauseous, getting problems to concentrate, some dizzyness, problems with burning skin, feeling hot and cold and so on. 

Share this post


Link to post
Melissa5000

the last 2 nights I slept lighter and 7-8 hours. But it was still ok. Yesterday I did some cleaning and I sat a lot as usual. Today I went on my ebike for groceries. My arms hurt an bit. Now I am sitting a lot again.

 

It is cold weather over here. Around 0 degrees Celsius. At night it freezes a bit. 

 

I did my finances and I canceled the newspaper and a magazine. I took a new cheap subscription for TV/internet/phone for a year wich saves me money. I cancelled the library as I am not able to visit it anymore. They moved the library and it is too far from home now. Alltogether I saved a bit on my monthly bills this way. But the rent, energy and health insurance will go up more than I saved! 

 

I am sitting again. Boring. But activity will ramp up symptoms!

 

 

Share this post


Link to post
Melissa5000

The last days I slept very light since my period is over. The light sleep must have something to do with my menstrual cycle or my hormones. I always sleep lighter in the first week after my period is over. 

I spent some days with my boyfriend. It was a good time but I was more sensitive by the lack of sleep. More aches and pains.

 

Yesterday we went to Eyesandmore for an eyemeasurement. I had not done that since 2004! So it was time! But the optician could not find my right strenght for the glasses. It took half an hour. My eyes just got tired of all the changes she made. Finally she found it. I had test glasses on. But I felt dizzy, saw double. And I did not get the impression that the eye measurement was correct. 

This afternoon I went on my ebike to another optician. This time everything went much quicker. And my sight was very sharp with the testglasses on. The optician of Specsavers did a much better job! The difference between the two measurements was very big! I was relieved that this optician found the right strenght of the glasses so easily. Just a few adjustments here and there and I saw sharp! She studied my eyes with a microscope and they measured the eye pression. But everything was just fine. I had always contactlenses. I just bought them at a drugstore. But I doubted if I had the right strength. But now I want to wear glasses. I had some advice in the shop and found a nice pair of new glasses. In january I can pick them up. My insurance covers everything!

 

Now I am just sitting and resting again. I had never been so far from home on my ebike! I am very satisfied with it. 

 

 

Share this post


Link to post
Carmie

Hi Melissa, 

 

I’m so sorry you are still struggling with pain. Glad to hear though you’ve had some withdrawal normal.

 

That ebike of yours has been getting a good workout since you got it, and congratulations on being able to travel so far. I reckon an ebike or an electric scooter would be great for me too, though I live in the city and there is a lot of traffic. I don’t think we are allowed to ride bikes on the footpath. 

 

So glad you got the right glasses. The world will be clear for you again.🤓

 

Sending hugs🤗

 

 

Share this post


Link to post
Melissa5000

Thanks a lot Carmie!

 

I ride with my ebike on the street, I am not allowed to ride it on the pavement over here. 

 

The electric bicycle saves me energy. I could not cycle so far on a regular old fashioned bicycle!

 

 

Share this post


Link to post
Carmie
6 minutes ago, Melissa5000 said:

Thanks a lot Carmie!

 

I ride with my ebike on the street, I am not allowed to ride it on the pavement over here. 

 

The electric bicycle saves me energy. I could not cycle so far on a regular old fashioned bicycle!

 

 

 

That really is a great mode of transportation Melissa, 

 

I have CFS and don’t have the strength to ride a normal bike. If I did get on a bike I wouldn’t get very far, like you. The traffic is so bad where I live though so I don’t think it would be safe riding an electric bike on the street, and I’m not allowed on the footpath. Maybe if I just took all the back streets.

 

Actually, an electric scooter or bike would be excellent for anyone going through withdrawals that didn’t have a lot of strength, especially if they lived somewhere where there wasn’t much traffic. They would be expensive though, wouldn’t they?

 

Enjoy your rides🚲💚

Share this post


Link to post
Melissa5000

Last night I slept 7 hours, but it was light sleep. I went on my ebike to the pharmacy and the supermarket.

I spent most of the day just sitting at home. I have face ache from chewing too much. 

 

 

Share this post


Link to post
Melissa5000

Last night I slept 7 hours but I still needed more sleep. But I got up because it was late. I slept a little deeper.

 

Today I did not much I sat the entire day. I cooked a meal and washed the dishes. Just sitting at my desk and working a bit.

 

My fingers/hands and arms hurt.

 

I'm not much better yet. I am holding now for 6 months! 

Share this post


Link to post
Melissa5000

Last night I slept over 9 hours but I needed it.

Today I did around 1,5 hours housekeeping and also cooking and washing dishes. I am happy with the achievement.

 

But my arms/hands/fingers still hurt. I feel a mild storm of nervepain. So I have to sit again. 

Share this post


Link to post
Melissa5000

Yesterday evening I was decluttering for half an hour. When I sat down I had a mild storm of nervepain that stayes the entire evening. Very dissapointing!

 

Last night I slept for 9 hours again. I was still tired when I woke up. 

 

Today I spent 1,5 hour cleaning. After it I did the cooking and washing dishes. Now I am very tired. I have aches and pains everywhere. And my arms feel very sensitive.  I am relieved that I cleaned a lot again. But it tires me out. 

 

My boyfriend is driving to my house now. I am looking forward to see him again. We will spend christmas together and with family. 

Share this post


Link to post
Melissa5000

Last night I slept 8 hours. I went with my boyfriend to the supermarket.

 

We had an easy day. We went for a small walk of 1400 meter. It went ok. 

 

My hands hurt  and I have locally small spots like a fingertip or a part of my hand or toes that feel ice cold! They feel stif and numb till I rub it and the bloodflow comes back. 

 

Now we sit at the tv and the christmas tree.

 

Merry Christmas! :)

Share this post


Link to post
Callie

Melissa5000, Hello and Merry Christmas!

 

I don't know the type of pain in your hands for sure, but I was just wondering if you ever considered wearing latex gloves. My hands hurt in that they are extremely hypersensitive. My sense of touch is no longer normal. I found that latex gloves help buffer my skin from the environment. I don't wear them all the time, but it certainly helps when I do.

 

Healing thoughts to you,

 

Callie

Share this post


Link to post
Melissa5000

Hello Callie! Thank you for your advise. Sometimes the skin of my hands is sensitive. But mostly the pain is deeper in my hands. My daily pains are around the muscles and the tendons in my hands. That is where it burns every day. But some days it spreads to the skin as well. But not every day. This happens for me when I had too much activity/movement and I get a storm of nervepain through my entire body together with lots of other symptoms. 

 

25th december we had a lovely day with family and a christmas dinner at the christmas tree. 

In the evening everything was still fine. But after midnight I suffered cryingspells, fear about my finances and panic. Also fear about my health. I could not stop crying for hours. 

 

Last night I only slept 6 hours. Today I have more nervepain so I have to sit a lot and I can't go out to do something nice. I cannot go for a small walk or whatever. My boyfriend went to the shop on a bicycle this afternoon and now he is going for a big walk on this 2nd christmas day. I can't join him and I feel worthless. It happens so often that I can't do much on a day but sitting. 

 

I have a mild storm of nervepain around my arms. I know it will get worse if I would go for a walk so I don't go. 

 

Merry Christmas!! :)

Share this post


Link to post
Melissa5000

I had some nice days with my boyfriend but he had to go home because he had to work. Now I am alone again but I speak to him on Whatsapp all day and I see him on a webcam on skype when he is home. 

 

I have problems falling asleep lately. When I finally sleep I dream a lot and wake up often. In my sleep I have a lot of muscle tension. So in the daytime I start with muscle pain all over. 

I noticed that very mild movement like washing the dishes improved the muscle tension in my arms. But I have to watch out that I don't get too much movement otherwise he storm of nervepain will come back. 

 

At the moment my arms and hands hurt a lot. I have also muscle tension in my chest and legs. I try to cope as best as I can.

 

I went to the supermarket on my ebike, picked up groceries and cycled home. Children and teenagers are playing with firework. It is the time of the year. I don't necessarily need to go to a shop anymore so I can avoid all the firework. I cooked and washed the dishes and now I am doing the laundry. 

Share this post


Link to post
Melissa5000

Last night I slept 8 hours. 

 

I watched skating on tv.

 

I still loose a lot of hair when I wash my hair. At the moment I have some acne as well. It happenend since I quit the birthcontrol pil a year ago. I used to have a big thick long ponytail. But now my ponytail is very thin. I had to cut it a lot shorter. Still no improvement.

 

I did cooking and washing dishes. After it I managed to do one hour of housekeeping. After it my toes were burning from standing. My back is very tired and my fingers burn.

 

Now I have to sit down the rest of the evening. And rest like a 93 year old instead of a 43 year old. 

 

I have been holding my meds for over a half year. I expected to see some improvements by now. But it is the same as a few days after my last updose. 

It makes me feel very insecure that I don't improve. I wonder if there is still hope for me or that I stay like this for the rest of my life. I don't know what I can do about it. Any advice?

 

 

Share this post


Link to post
Melissa5000

Thanks a lot for the link ChessieCat!

 

But this makes me wonder: should I keep on holding? Or should I resume my taper to improve over time?

 

What would be the best thing to do for me at the moment?

Share this post


Link to post

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

Terms of Use Privacy Policy