Doctorsrcrap: can't cry and frustrated

[FindRest]

Did they do bloodwork to check your electrolytes? I went into tachycardia (high heart rate) during my taper and found out my potassium was low. The tachy finally went away after I took a few days worth of potassium and magnesium. Pain, however, can also cause high heart rate. In that case, reducing the pain will help. 
 

I think it’s smart to avoid gabapentin if at all possible. I ended up taking a short course of a prescription NSAID which helped my pain greatly.

[Doctorsrcrap]

@FindRest

No they didn't run blood tests. To be honest they didnt give a ****. 

how do i get my electrolytes up or whstever without more supplements. I'm done with supplements. I can't believe I'm in such bad shape. 

The pain I'm having I don't know what's causing it but it's getting worse and no one wants to seem to help. I've not read anyone on here experience the same thing so concerned I've done some damage but no one is bothering to find out what. 

And everyone keeps telling me you can't have an adverse reaction to vit D. Well this isn't the first time. Infact the first time I ended up on antidepressants. Starting to think I didn't have an anxiety disorder to start with ffs. 

[FindRest]

14 hours ago, Doctorsrcrap said:

how do i get my electrolytes up or whstever without more supplements.

Google will give you lots of information of the foods you can eat for specific electrolytes. Getting them from food is better anyway. The key is, however, to get bloodwork done to see if you are low in any first. It’s dangerous to raise some of the electrolytes too high. for example, potassium can cause big problems if it’s either too low or too high. It affects your heart.

[Doctorsrcrap]

The nerve pain I'm having is unbearable and the fact I can't find anyone with the same thing is awful. Dr isn't giving me an answer and I can't manage the pain. I don't know if this is withdrawal or something else entirely and I'm not getting anywhere with finding out. I think this might be the end of the road for me. 

[FindRest]

At this point, in my opinion, it probably doesn’t matter if WD is causing the pain or not. What you need is relief. Figuring out what is causing it will be a lot easier once you reduce the pain level. 

 

What are you currently doing to reduce the pain? Are you taking any medications or OTC products for the pain? Has your doctor prescribed anything? What does he/she say? do they believe you are in pain?

 

I know you’ve probably answered some of the above in your other posts, but I don’t have time right now to read through the whole thread. 
 

13 hours ago, Doctorsrcrap said:

I think this might be the end of the road for me. 

As someone dealing with chronic pain, I understand why you feel like this. Do you have a good therapist you can talk to? Mine will listen to my desperation and is not threatening to put me in some hospital. She knows what these drugs and medical procedures have done to me. 
 

If no therapist, a good friend? If you belong to a church, maybe a pastor or leader? 
 

I think you need someone in person who can give you some emotional support. I have a great husband, but found it helps me a lot more to have a therapist too.

 

I’m also wondering if it’s time to change doctors.

Edited April 12 by FindRest

[Doctorsrcrap]

They tried a few different meds bur none of them have touched the pain. Last night I collapsed. 

I'm now taking pregablin to try and help the pain. 

The wait list fir a specialist is 1 year and I can't wait that long.

I'm paying private ti see a neurologist next week.

My MRI was good. There are 2 small cysts but the doctors are arguing as to whether that is the cause. 

I dint know why none of the pain relief is working all I know is I can't stay in thus much pain. 

If thus is WD I have no idea why thus is kicking off thus far out. Why would that happen? 

[FindRest]

16 minutes ago, Doctorsrcrap said:

If thus is WD I have no idea why thus is kicking off thus far out. Why would that happen? 

There’s not one answer that fits everyone, and I don’t know of any scientific study that has been done to give us any answers to that question. All I know is that it’s not uncommon for people to have a terrible wave years after they’ve been off. Some are preceded by simple things like drinking alcohol or taking a new supplement or medication. sometimes it’s stress. Sometimes no one knows. Those who tapered off their AD/AP too fast or CT’d tend to have more of these episodes later on than those who have tapered down very, very slowly (10% per month or less).

 

It’s obvious that our brains, CNS and other systems in our body continue to heal at a VERY slow pace after we are off. The drugs spent years changing them and it will most likely take years for them to change back. We are not “healed” when we get to zero. Not even close. But, each year should get better than previous one. That’s what I’m banking on anyway after reading the experiences here and elsewhere. 
 

40 minutes ago, Doctorsrcrap said:

I'm now taking pregablin to try and help the pain.

Please add this to your signature along with the other medications you have recently tried, the dosages, and the dates. 
 

A word of caution: Your body is most-likely extra sensitized to all medications now. “Normal” dosages are often too high for us. Also, it’s better to start out at tiny dose of anything new to see how it affects you first. 
 

When did you start the pregabalin? What dose? Any changes in symptoms?

[Doctorsrcrap]

It's just silly that this is why worse than anything I experienced in the first year and a half. It's awful. 

 

[Doctorsrcrap]

I think the pregablin is making me feel spaced out but I have to have something for the pain nothing else was working. I literally tried everything. Hot packs cold packs OTC meds. Tens machine. Physio. I was at a loss of what to do. 

I'm hoping I can get some answers as to what is happening here so then I can taper off the med. I really don't want to be on it. I was so happy being med free. Feel like a failure 

 

For some reason my signature will not update 

[Farm24]

On 1/18/2024 at 5:46 AM, Doctorsrcrap said:

@FindRest

Thank you so much.

I kind of wish I had kept a symptom diary from the beginning but I didn't. Would be nice to be able to look back and actually see improvement.

For me it's hard to be ok with the fact that I don't have windows. It's been almost 18 months and I havent really had one. I know some people recover without the waves and windows pattern but it feels like it would be easier if I had moments of relief. I guess though for me it's not meant to be. 

Can proposal cause some of these side effects? Or quitting it?  

[LotusRising]

On 4/2/2024 at 3:03 AM, Doctorsrcrap said:

wish I had a mod or mentor to speak to but I don't think anyone is watching my thread since shep left 

Hi @Doctorsrcrap

 

I just skimmed your posts. I had very severe nerve pain while I as tapering. It came and went for many months and moved around to different parts of my body. If it's any reassurance, I am now just over a year off medication and the pain is much more tolerable and occurs way less frequently. Do you find the pregablin is helping at all?

[Doctorsrcrap]

@LotusRisingI'm not sure if it helpinghelim gutted that I'm taking it but I'm in so much pain I've had to do something whilst I try and find someone to check there's not a physical problem because it's unbearable. It's the worst thing I think I've ever experienced. It's made it impossible to sit or lie down and I can't keep that up. I can't keep walking and standing. I'm exhausted. I've not heard of anyone else on here have the nerve pain in there bum and leg which meant they couldn't sit. I guess I'm going to have to try and stabilise on the pregablin if the pain is caused by withdrawal and then do a slow taper off. Otherwise use it whilst they fix the source of the problem and do a slow taper. 

I'm gutted this has happened. I feel like I have failed but I couldn't take the pain anymore 

[Doctorsrcrap]

@FindRest I dont understand 

[LotusRising]

@Doctorsrcrap

 

Try not to feel like you've failed. If it helps to stabilize your pain, then it's likely worth it. 

 

My pain was not in the same area, but I was incapacitated nevertheless. It seems we are all different in where the nerve pain is expressed. Is the pain there consistently, or does it wax and wane? Mine was quite prevalent for a few months and then started to fluctuate in more a of a windows and waves pattern. 

 

I found putting pressure in areas around the painful area to help somewhat. It by no means took the pain away, but it did help some to 'distract' the nerves a bit. Have you been to an osteopath, chiro, massage therapist, or acupuncturist?

[Doctorsrcrap]

@LotusRising

Yes I've been to oesteo and physio and then of them could work out what the problem was. Because the nerve pain is located where it is its unbearable to sit down. 

I'm just a mess to be honest and the pregablin isn't yet helping 

[LotusRising]

I know it's frustrating when there seems to be no answers, but perhaps it's reassuring to some degree that there are no structural issues? I did find some relief with both gentle massage and acupuncture.

 

How long have you been taking the pregablin? 

[Doctorsrcrap]

@LotusRising

Only a few days. I don't know how long it takes to work but it's not doing anything at the moment. I hope it does soon or I don't know what I will do. It has rendered me non functional. I can't believe this has happened. 

I was working cooking cleaning, it was hard but I was doing it and now I'm useless. I can't believe it at nearly 22 months out. I don't understand how things have got so much worse this far out. It doesn't make sense to me. 

My MRI showed two small cysts on the lumbar spine but the guy who ran the MRI said they can't be the problem whereas a different person said they could be. So annoying. 

It doesn't help that my heart rate is through the rough too! This is utter madness. I'm scared I will never get my life back 

[LotusRising]

12 minutes ago, Doctorsrcrap said:

My MRI showed two small cysts on the lumbar spine but the guy who ran the MRI said they can't be the problem whereas a different person said they could be. So annoying. 

Are they doing any further follow-up? How big are the cysts?

[Doctorsrcrap]

@LotusRising

Apparently they are tiny. The NHS arent interested in helping me so im having to pay private. Im seeing a neurologist this week for a third opinion as im certain its nerve related. Hopefully they can help. 

I've never known pain like it. 

I feel horrible for complaining on here but no one understands you know. You have no idea how much it means that your are replying to me. 

I'm so scared right now. 

I think taking the vitamin D 2 weeks ago has screwed me over too. My heart has been crazy since! 

[LotusRising]

Nerve pain is no joke. It was one of my worst symptoms, so I can truly relate. 

 

17 minutes ago, Doctorsrcrap said:

I think taking the vitamin D 2 weeks ago has screwed me over too. My heart has been crazy since! 

 

What do you mean? Do you think it's related? Vitamin D has effects on the nervous system for sure. 

[Doctorsrcrap]

I don't think vitamin D supplements are good for me at all. I can't help but think some of my problems have come from taking that 2 weeks ago. Who knows how long that reaction is going to take to go away. So annoyed that I took it. I don't believe it has anything to do with the nerve pain though. 

[Doctorsrcrap]

@LotusRising

The pregablin is making me feel really sick and spaced out and I don't like it. If I wanted to could I just stop taking it? At what point does that become not an option. Its making me feel really ill 

[FindRest]

On 4/14/2024 at 9:34 AM, Doctorsrcrap said:

My MRI showed two small cysts on the lumbar spine but the guy who ran the MRI said they can't be the problem whereas a different person said they could be.

Did they tell you what kind of cysts they are? I have several Tarlov cysts, aka nerve root cysts, on my spine. A couple of them are large and a few more medium and small. They wrap around the nerve roots. Mayo Clinic said the treatments are too risky and don’t work for a lot of people. They also said many doctors downplay their significance but they can be debilitating for many patients. You’ve repeatedly said that no one understands the pain you are in. The truth is some of us do, like I’ve told you before.  I can be crippled by nerve pain. I’ve passed out from the pain several times. I know many people have it worse, as mine comes and goes, or I go in waves of several days/weeks, then it gets better.

 

Things that have helped me are:

1. Keep hunting for a dr who will take you seriously. Don’t stop. Also hunt for the right physical therapist, one who knows how to help you.
2. Reviewing the MRI report and researching the exact diagnosis. (You need to find out what type of cysts you have and the precise locations. This will lead you to the right type of specialist.)

3. Wearing a back brace.

4. Ice/heat and repeat, repeat, repeat. Every single day. 
5. It is possible to have epidural shots into your spine to take the pain away. They work wonders.

6. My TENS unit has been my saving grace. If you don’t have one, get a good one, then have a physical therapist show you where to attach the electrodes for best results. Don’t get a cheap one. 

Edited April 16 by FindRest

[Doctorsrcrap]

@FindRest

Went to see a neurologist today. He is running another more precise MRI scan. So will wait and see what comes of that I guess

[LotusRising]

16 hours ago, Doctorsrcrap said:

The pregablin is making me feel really sick and spaced out and I don't like it. If I wanted to could I just stop taking it? At what point does that become not an option. Its making me feel really ill 

At this point, if it's been less than a week, I would personally just stop it. I tried pregablin myself for about a month, but when it wasn't helping and I knew I didn't want to raise the dose, I did a very quick taper.

[Doctorsrcrap]

I do not understand how at 22 months off I am in the worst shape I've been in! How is that possible! 

Shouldn't have taken the vit D, pretty sure I can't tolerate it, I have no idea why and no one seems to care to find out. Who knows how long it's going to take to feel better from taking that. 

Then my short stint with pregablin for the ridiculous amounts of pain. Terrified what part that's going to play in setting me back. 

I honestly thought at 22 months off I would be doing better. I can not believe this is happening to me. 

I don't think recovery is my destiny. I either messed myself up to many times that I can't get better. I have some other underlying problem that no doctor can be bothered or are intelligent enough to find out. 

Maybe I just am crazy and will never get better because I'm unhinged

Who knows. At this point not me. 

I did used to truly believe I could heal from this. But now my belief is gone. I've not once had a window just different levels of crap and now I'm worse than ever. I can not understand it. I thought things would gradually get easier. This is just a kick in the teeth to be honest. 

I don't know where to go from here. 

 

[Doctorsrcrap]

A poem

 

I sit and wonder to myself when will all this end
I try to explain the pain I feel but you can't comprehend
Was it my fault, did I ask for this the day I walked into your room
Not once did you stop to think about the effects of the pills you gave me to comsume
You give them our like candy like I'm a kid on Halloween night
Do you even care at all what is wrong and what is right.
Have you ever stopped to wonder why I still decline
Did you ever stop to think it could be your fault and not mine
And now here we are again, I'm asking for your advice
But when you look at me I'm sure you see labatory mice
She must still be crazy she must still be mad
I see your fingers twitch, you want to grab that prescription pad
If the blues one didn't work how about we try red
How about pink or green or orange who cares she'll stop complaining when she's dead
Why wont you listen, that you do this to me
You might not have meant to but I think it's clear to see
Or is the fact that your actions destroyed another's life
To difficult for you to go home and have dinner with your wife.
Its not fair that we all suffer, there are thousands more like me
Who know that they aren't crazy but poisoned by their GP
All I can hope is one day the truth will finally be out
And you will stop inflicting pain on us and gaslightebing us til we shout
I hope that you never suffer the way that we all do
All I ask is there be a change before you destroy the next generation too.
I should of taken illicit drugs they would have been easier to quit
Rather than the rat poison that made me feel like ****
I hope and pray that a change will quickly come
And in the future people won't have to suffer like I have done

[Tigz91]

4 minutes ago, Doctorsrcrap said:

A poem

 

I sit and wonder to myself when will all this end
I try to explain the pain I feel but you can't comprehend
Was it my fault, did I ask for this the day I walked into your room
Not once did you stop to think about the effects of the pills you gave me to comsume
You give them our like candy like I'm a kid on Halloween night
Do you even care at all what is wrong and what is right.
Have you ever stopped to wonder why I still decline
Did you ever stop to think it could be your fault and not mine
And now here we are again, I'm asking for your advice
But when you look at me I'm sure you see labatory mice
She must still be crazy she must still be mad
I see your fingers twitch, you want to grab that prescription pad
If the blues one didn't work how about we try red
How about pink or green or orange who cares she'll stop complaining when she's dead
Why wont you listen, that you do this to me
You might not have meant to but I think it's clear to see
Or is the fact that your actions destroyed another's life
To difficult for you to go home and have dinner with your wife.
Its not fair that we all suffer, there are thousands more like me
Who know that they aren't crazy but poisoned by their GP
All I can hope is one day the truth will finally be out
And you will stop inflicting pain on us and gaslightebing us til we shout
I hope that you never suffer the way that we all do
All I ask is there be a change before you destroy the next generation too.
I should of taken illicit drugs they would have been easier to quit
Rather than the rat poison that made me feel like ****
I hope and pray that a change will quickly come
And in the future people won't have to suffer like I have done

Wow! That poem is amazing and honestly so bang on. I hope you can get some relief soon. Sending hugs 

[Jaffa]

Whoa! Well done . That could even be a rap. You could put that to music. I hope your pain improves real soon 

[Tale]

Hey! I just read your poem. It is very good and describes perfectly how a lot of us feel. I also tend to write poems and songs when I feel really bad. It helps a lot. I send you a virtual hug ❤️

[Sonia009]

@DoctorsrcrapI agree, a brilliant poem!

[Tom2020]

@Tom2020

>What did you take pregablin for?

I took it for anxiety.

 

Are you getting any benefit from pregabalin? Are the side effects improving? How much are you taking?

 

I react badly to vitamins D and C and probably others. You are not crazy. Your doctor simply doesn't know what s/he's talking about. I find D stimulating, though my reaction is not nearly as bad as yours.

[Doctorsrcrap]

@Tom2020

What reaction do you get from vit d? 

 

I only took pregablin for 4 days and then stopped. I was using it for pain but it wasn't really doing anything apart from give me side effects so I stopped it 

[Doctorsrcrap]

@LotusRising

I only took the pregablin for about 4 days then stopped. Should I be worried about withdrawal from that or shoukd it be OK because it was only 4 days? 

[LotusRising]

@Doctorsrcrap

 

In my opinion, that will likely be just fine. 4 days is a very short time, with little chance of incurring any dependence. 

[Tom2020]

On 4/22/2024 at 10:34 PM, Doctorsrcrap said:

@Tom2020

What reaction do you get from vit d?

I feel overstimulated for the rest of the day, I get diarrhea and then I sleep badly. Nothing like your reaction. Luckily I don't react to the active form (calcitriol).

 

From memory, it takes 7 to 10 days to get dependent on pregabalin. It has a short half-life so if stopping was to cause you problems they would have started by now.