Doctorsrcrap: can't cry and frustrated

[Doctorsrcrap]

I've booked myself in to see a pelvic gynocologist specialist because I can not cope with it. Its indescribable. 

My period started abd the pain got even worse. 

[Happy2Heal]

5 hours ago, Doctorsrcrap said:

I've booked myself in to see a pelvic gynocologist specialist because I can not cope with it. Its indescribable. 

My period started abd the pain got even worse. 

good luck! I hope they listen and take you seriously.

 

If I were you, I wouldn't even introduce the idea that your symptoms might come from withdrawal off psych drugs- Most drs don't understand WD at all and even if they do, it can give them an easy out to be lazy and not really try hard to get to the root of your problem- just pass it off as something they can't fix.
 

 

so sorry you've had to go thru all this. 

 

 

 

[Doctorsrcrap]

@Happy2Heal

Thank you for all your support. 

 

I'm just hoping I can make it until the appointment. I'm holding on by the skin of my teeth 

[Happy2Heal]

ohhhhhhhhhhh so sorry.

 

would it help to see of my past rats eating spaghetti in bed? (in their hammock)

 

https://youtu.be/NDvdfCXWUHY?si=0MgdzCg5GwHI6thk

 

 

these are different rats but they have spaghetti too, one of them does something really funny and cute 

https://youtu.be/nCa7Uc5dg2g?si=yX75DjvDMpBZJW_5

 

[Doctorsrcrap]

So I'm 2 weeks away from my 2 years off ADs and I'm still not improving. I don't have windows like most people do and my symptoms I do have are severe. 

Seeing as the first 18 months were awful but I could function and now I am struggling to function and new symptoms are arriving and are very bad it does beg the question if something else is going on. I think it's best at this point to have other things ruled out. Even if only for my own peace of mind. 

I've just spoken to a specialist who tells me I could br b12 and iron deficient even though my GP says I'm not, but they don't seem to know anything. I have tried supplementing b12 but my active levels never go up. This is whst caused alarm to me. 

I'm also off to see a specialist pelvic gynocologist tomorrow to see whst they have to say. 

I'm scared because if it's all withdrawal I'm worried I will nake things worse but at the same time life at the moment isn't sustainable this way and I don't think its safe just to assume everything is withdrawal at 2 years out. Its best to be checked. 

 

Current symptoms

Back pain

Burning buttocks 

Leg pain

Dizzy

Lightheaded

Head pressure

Nausea 

Fatigue 

Racing heart 

Cog fog 

 

[Jaffa]

@Doctorsrcrap

So sorry you are suffering so much. It’s interesting looking at your symptom list, that there are no psychological symptoms mentioned - no terror, acute anxiety, insomnia, depression, dp/dr, anhedonia. I’m curious to know whether any of these symptoms are there. Perhaps they are masked as you struggle with the more overwhelming physical symptoms? 
Sending warm thoughts and well wishes your way 

[Doctorsrcrap]

I am anxious and depressed but these are only bi products of the pain I'm in.

No pain would equal no anxiety or depression 

[Barry2954]

18 minutes ago, Jaffa said:

@Doctorsrcrap

So sorry you are suffering so much. It’s interesting looking at your symptom list, that there are no psychological symptoms mentioned - no terror, acute anxiety, insomnia, depression, dp/dr, anhedonia. I’m curious to know whether any of these symptoms are there. Perhaps they are masked as you struggle with the more overwhelming physical symptoms? 
Sending warm thoughts and well wishes your way 

If you check page one it mentions brain zaps, nausea, and rage, as being early psychological symptoms. I was thinking benzodiazepine withdrawal because of those symptoms, as I had experienced them myself. The trouble is that pain can result from other psychiatric meds, as this article about antidepressant induced myalgia describes. https://neuro.psychiatryonline.org/doi/full/10.1176/appi.neuropsych.13060134

[Doctorsrcrap]

The nausea rage and brain zaps were from effexor discontinuation not from benzos 

[Catina7]

@Doctorsrcrap, so sorry you're suffering all these symptoms.  You've only been off the Propranolol since 1/19/24.  I'm wondering if what you're experiencing could be related to that.  I would definitely get as many tests as you can just to rule out anything else.  I've actually been having pain in my pelvic area too and have an ultrasound scheduled soon.

[Doctorsrcrap]

@Catina7

What is your pelvic pain like? 

[Catina7]

1 hour ago, Doctorsrcrap said:

@Catina7

What is your pelvic pain like? 

 

It almost feels like I have an ovarian cyst or something.  The whole thing started last month when I felt like I was getting a UTI.  A lot of urinary urgency, then horrible lower back pain and a feeling of bloating.  Then I started getting abdominal/pelvic pain, which was primarily on the lower right side.  It's been a sharp, stabbing kind of pain in the vicinity of my ovary.  I've had CAT scan, which didn't show anything.  I'm getting a bladder and pelvic ultrasound on the 23rd of this month.  

 

Just wanted to add that I never had a UTI.  All tests were normal.

Edited July 8 by Catina7

[Doctorsrcrap]

Why does all this stuff happen it's an absolute nightmare. 

I hope all your tests are clear.

I find doctors can never be 100% about anything so I don't know how you get medical causes ruled out 

[Doctorsrcrap]

Just went to the GP to calmly talk to them about the pain I'm in and ask to try b12 injections as my active is low. They will not recognise active b12. It's a waste of time. She told me to stop searching for answers amd that all my symptoms are probably due to mental health issues. 

I give up. 

I think it's time to admit I've lost.

[Jaffa]

@Doctorsrcrapyour name says it all!

 

Im feeling so sad for you right now and don’t know what words I can offer that may keep you strong and  encourage you to keep going. 

7 hours ago, Doctorsrcrap said:

I think it's time to admit I've lost.

I don’t think this is about winning or losing. This is about finding a life free from harmful medication and coming to know our authentic self. That said I personally feel that if the pain is so great that one feels it’s impossible to go on , if it’s like this for an extended period then maybe low dose medication is a better option. Did you explore the low dose amitryptiline? 
 

I know these decisions are very difficult. I honour and support you whatever you decide to do. Sometimes ,as Ariel once said so eloquently, we have to just exist in this space of not knowing what to do. We need to release this urge to work it out . Uurgh! This is so easy to say when one is not feeling so terrible. I find this exceedingly difficult but I’m saying it anyway. We think that if we find a reason why this is happening then we can find a solution. The truth is that we may never know what’s causing the pain. My guess is that it’s all withdrawal. Nerve pain that is amplified from the effect of withdrawal on the nervous system. If this is the case then time is the only healer. Sending you love and strength. You are amazing. You have survived so much pain and that goes to show that you are a very strong person. 

[FindRest]

4 hours ago, Jaffa said:

if the pain is so great that one feels it’s impossible to go on , if it’s like this for an extended period then maybe low dose medication is a better option. Did you explore the low dose amitryptiline? 

I would not recommend taking any AD for pain, especially when one doesn’t know the cause of the pain. This is how many people get started on psych drugs. Plus, starting a new psych drug with a sensitive cns after coming off previous psych drugs is a very rocky slope that can go bad quickly.

 

It’s better to find the source of the pain, then you can learn your options for addressing it. Doctorscrap, I know you’ve had a lot of tests done already, and I believe at least one MRI if I remember correctly. You might want to have your MRI read by another radiologist. Doctors do not have that expertise and usually rely on the reports. I hope you find some answers soon with your upcoming appointments. 

If withdrawals is what is causing your pain, at least you will have ruled out all the other physical things you might be worried about. I’m sorry you’re going through this.
 

[Emonda]

6 hours ago, Jaffa said:

Did you explore the low dose amitryptiline? 

 

1 hour ago, FindRest said:

I would not recommend taking any AD for pain, especially when one doesn’t know the cause of the pain. This is how many people get started on psych drugs. Plus, starting a new psych drug with a sensitive cns after coming off previous psych drugs is a very rocky slope that can go bad quickly.

 

I completely agree with FindRest.

 

This site does not recommend medication to members. We can only provide information to those who want to consider tapering medication.

 

14 hours ago, Doctorsrcrap said:

I give up. 

I think it's time to admit I've lost.

 

It's not an enjoyable journey we find ourselves on. Better days are ahead.

 

[Doctorsrcrap]

I've had 4 mris. Pelvis, lumbar spine, upper spine and hip. Nothing of any Real note was found. 

I feel like I could sit and wait this out if the problem was somewhere else but the fact I cant sit down makes this near enough impossible to deal with. 

I am worried something else is the cause and not withdrawal but I don't know how to know. It would be obvious if I got waves and windows or something like some of my other symptoms. For example I always had a problem with my throat but then it would dissappear for a bit and be replaced with another symptom and then it would come back and they would cycle through. My pain isn't following that same pattern. If anything just a gradual worsening. 

I wanted to rule out endo but I saw the gyno yesterday and he said he doesn't think it is. He said even if I did have endo he doubts it would be effecting my buttocks and even if they were it would be complicated. He is willing to run another MRI which specifically looks at the nerves in the pelvis but it's a lot of money and I would need to travel to a specialist imaging centre. I would just do it but sitting in the car for any amount of time is painful. 

 

Then there's my vit b12. I can't get a doctor to look into that properly. I don't know the ins and outs of how it works but I do know b vitamins are vital for nerve health. If anyone else on here knows much about vitamin b12 and testing then I would love to chat about it because I'm pretty sure my thinking on the situation is correct and my doctor is wrong but they don't listen. 

 

So...... I'm really not sure what to do from here. If this pain went away I think I could cope quite well with what remains but the pain had literally ruined my life and its not a sustainable way to live not being able to sit or lay down. It's exhausting.

 

[Tale]

Hey, I've been reading your thread and I'm very sorry your pain is not going away. I am not an expert and this is all my opinion. I could be wrong. This could be withdrawal, but to me it sounds like your muscles got very weak and weak muscles tend to hurt a lot. Do you feel this way? I know doing stuff might be quite painful to you, but I highly recommend doing exercise. Start doing very little and keep increasing very slowly. I believe your pain would diminish, but it will take a lot of time and effort. Focus on the muscles in the areas that hurt the most. Of course it would be ideal to get things checked out, but it is not always possible.

 

It saddens me to see you struggle that much so long after stopping meds, but I believe you can get better. I also have some pain (not nearly as much as you) and I'm doing exercises for the neck and hips, but walking and swimming can be very healthy.

 

https://mskneurology.com/

 

This website has some interesting ideas. You could read some of the articles. But always remain critical of any ideas or opinions and evaluate if this could help or not. This is all I can do to help you. I hope it can help just a little bit. ❤️

[Doctorsrcrap]

Thank you for your concern. 

I walk every day for over an hour. Sometimes more. I've also done a whole bunch of physio for months. None of this has helped me. 

I'm certainly not sedentary and I get plenty of exercise. 

[FindRest]

8 hours ago, FindRest said:

You might want to have your MRI read by another radiologist.

Like I said above, have them send your MRIs to another radiologist for a second opinion .

5 hours ago, Doctorsrcrap said:

He is willing to run another MRI which specifically looks at the nerves in the pelvis but it's a lot of money and I would need to travel to a specialist imaging centre. I would just do it but sitting in the car for any amount of time is painful. 

If the pain is that bad, then I think I would be willing to do anything to make this happen. 
 

How often are you seeing the physiotherapist?

 

Are you seeing a mental health therapist or counselor? If so, how often?

How are you able to be so active when your level of pain is as high as you say it is? Could you be doing too much activity? That too can cause WD symptoms to increase. Or, is there only pain when sitting? I’m getting confused now.

 

Here in the US we can just go in and have a B12 blood test taken without a dr’s order. At least where I live we can. 

 

Edited July 9 by FindRest

[Doctorsrcrap]

Sorry so I have back pain which increases with activity but the nerve pain is in my buttocks and that is just excruciating when I sit down. Its so much worse than the back pain. 

So as soon as I sit down on any pressure touches my backside it goes dead and then deep aches and then burns and burns and burns and burns. So sitting down is just a no go. 

It's ridiculous. I walk because I can't sit or lay and I can't just stand in one spot all day. 

It's the most ridiculous situation I have ever been in and I don't understand 

[FindRest]

I’d be getting those spinal MRI’s looked at by another radiologist, or go ahead and get the expensive one the other dr offered.

[Doctorsrcrap]

Well they've been reviewed by a pain specialist and a rheumotologist and a neurologist 😢 

It's honestly just so stupid. 

You don't think it sounds withdrawal related then? 

[LotusRising]

9 hours ago, Doctorsrcrap said:

Then there's my vit b12. I can't get a doctor to look into that properly. I don't know the ins and outs of how it works but I do know b vitamins are vital for nerve health. If anyone else on here knows much about vitamin b12 and testing then I would love to chat about it because I'm pretty sure my thinking on the situation is correct and my doctor is wrong but they don't listen. 

Have you considered seeing a naturopathic doctor? They will know more about 'optimal' levels of B12, rather than the values a regular doctor will go by. If your B12 levels are low despite supplementation, it could be an absorption problem, which might be related to gut health/stomach acid. 

[FindRest]

10 hours ago, Doctorsrcrap said:

You don't think it sounds withdrawal related then? 

Usually when severe pain is associated with WD, from what I’ve seen, it affects more than one area of the body at about the same level, more or less. For example, my WD pain affects my neck, shoulders, and back at similar levels. Yes, at times the shoulder pain gets worse than the others, but that’s because due to my tight muscles (wd Related) it pulls one of my upper ribs out of alignment.

 

I do know of one other person who had terrible butt pain, a nerve-type pain, where they couldn’t sit or even do much. It went on for quite some time with little relief from PT. It also affected a part of her thigh. Her MRI showed that a nerve was being pinched in her spine. Her butt pain was unlike her other pains and at a whole different level.

[Doctorsrcrap]

I'm so confused. If no one thinks it's withdrawal but no one can find anything wrong I don't know how I'm ever going to fix it 

[FindRest]

1 hour ago, Doctorsrcrap said:

I'm so confused. If no one thinks it's withdrawal but no one can find anything wrong I don't know how I'm ever going to fix it 

It’s not accurate to say “no one”. Plus many, me included, think you are in WD. Not every symptom or health issue has to be WD. 
 

What coping skills have you learned and utilized to deal with this pain? You have pages and pages of suggestions here from others trying to help.
 

I asked a few days ago if you were seeing a mental health therapist to help you through this. I don’t think you answered. I think it would be helpful.

[Doctorsrcrap]

I do lots of things.

I use a tens machine

I exercise

I draw wgich isn't easy when you can't sit

I'm speaking with angie peacock tomorrow

I do cold water showers 

I've done hypnosis

Physio

Chiropractor

Oesteopath

Accupuncture

The list goes on haha

I have an appointment with angie peacock tomorrow

I'm not a big fan of therapist. A lot of them have gaslit me in the past.

 

Thanks for your help 

[Catina7]

2 hours ago, Doctorsrcrap said:

I have an appointment with angie peacock tomorrow

 

This is awesome!  She will definitely NOT gaslight you.  If anything, she will bring you renewed hope!  

[Doctorsrcrap]

So spoke to Angie and she said she knows burning is a withdrawal syndrome however she seemed a little perplexed by the fact its in my buttocks. Said not impossible but not one she's really heard anyone else report. This is what I thought. 

Spoke to a b12 and iron specialist. He said I am low in both and says I have an absorbtion problem. He suggests I start injections for the b12. I'm scared but I need to do something to help. He wants me to take folate and iron to as they all work together but I'm scared. 

[Catina7]

10 minutes ago, Doctorsrcrap said:

He suggests I start injections for the b12. I'm scared but I need to do something to help. He wants me to take folate and iron to as they all work together but I'm scared. 

 

All we can do is try.  Maybe it'll end up being just what you need.  💜

 

So glad you met with Angie.  

[Doctorsrcrap]

Yeah she is lovely. Maybe I should just give it a go. I'm just terrified of having a bad reaction. I don't even know which one to start with. Probably the b12 but I've got to self inject as doctor won't give them to me. A bit scary in itself but the supplements just don't work 

[Catina7]

1 minute ago, Doctorsrcrap said:

I don't even know which one to start with. Probably the b12

 

I think that would be best.  If you do both the b12 and iron at the same time and do have a reaction it'll be difficult to know which one caused it.  I hope it helps!  

[Doctorsrcrap]

So do I. Thank you. 

Need to take folate too. 

Madness 

[Jaffa]

48 minutes ago, Doctorsrcrap said:

Probably the b12 but I've got to self inject as doctor won't give them to me

That’s strange. My daughter had several b12 injections and it was done by the nurse at the doctors clinic. 
 

So pleased you saw Angie. Sounds like you recieved some validation and now have more clarity about this strange buttock burning. I hope the b12 brings relief and helps with nervous system healing.