Doctorsrcrap: can't cry and frustrated

[Barry2954]

Then the only thing which I can think to suggest is that you try to work out exactly when the back pain commenced and try to connect the onset with the cessation of a specific medication. Knowing which medication caused the pain, since several which you have taken can cause it, makes all of the difference in trying to fix it. Each medication acts through specific sets of receptors in the body and it may be possible to work out a way to restore normal function to those receptors if you know which one's they are. Otherwise you're stuck trying to cope with just generalised treatments. Try removing any cheese from your diet as that can help; in some people (myself included) cheese can induce lower spinal inflammation which causes mid-spine pain.

[Doctorsrcrap]

My back is rhe least of my worries it's the pain in my buttocks that burns so intense and stops ne from sitting that is doing me in.

This all started like 17 months out from CT so I have no idea how I would work out the cause 

[Barry2954]

I notice that in a previous post you described having sciatic pain. I assume that's the pain you refer to. I had that for decades. I coped with it by taking three tablespoons of glucosamine powder for a week at a time; prolonged use is damaging to the health and don't try it if you have a seafood allergy. That's just a band aid solution which helps to eliminate the symptoms until you can work out the underlying cause. I eventually worked out that the cause of mine was allergy to gluten. One of the things which doctors leave out when prescribing drugs is that they can alter the microbiome. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5369702/  It will still appear healthy in tests but the balances of specific bacteria can leave you with any of a range of gastrointestinal issues which you might not even think relevant. For me the gluten allergy meant that I wasn't properly absorbing nutrients required to maintain the discs between vertebrae. So, after a heavy lifting session in the army, my sciatic nerve was being crushed between the vertebrae. It might have helped if you had known what caused it but something I learned decades ago is that you can work out if you have any food allergies by removing them from your diet for two weeks and then trying them to see if you have a reaction. The bigger the reaction the worse the allergy so you may want to have someone around when you test. A really good way to work out which foods you may be allergic to is to consider which foods you love. Your love for some of the foods may be caused by your bodies release of endorphins to try to reduce the severity of the allergic reaction. My body produced endorphins for two weeks after I first gave up gluten; I was on top of the world. Food companies know about this response and sometimes tailor their products in order to induce the allergic response, knowing that the endorphin release will lead to addiction to the food.

[Doctorsrcrap]

But I've had MRIs my spine is fine so they would of seen a vertebrae problem. 

[Barry2954]

I notice that it only takes irritation of the nerve to cause the sciatic pain. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6858271/ In theory a specific drug could have caused neuropathic hyperexcitability through some mechanism resulting from whichever receptors it bound to. I have benzodiazepine induced neurological dysfunction because of the disruption of the normal function of GABA-A receptors which it binds to. As an example of how that could, in theory, cause your condition it is necessary to explain that neuronal hyperexcitability in the brain is usually calmed by GABA. So withdrawal results in the neuronal hyperexcitability which includes an increased sensory input from pain receptors around the body. In such a scenario your healthy body wouldn't normally have even sensed the sciatic pain if there was only a mild irritation of the nerve but neuronal hyperexcitability could be turning up the volume on what it's sensing. Again, knowing which specific drugs you were taking around that time might help to identify a specific mechanism which is most likely to have caused it. That might help with identifying actions which could alleviate the pain.

[Doctorsrcrap]

There's really no way of me working that out when you look at my med history. Your guess is as good as mine. I could work it out if it started straight after stopping perhaps but when it shows up 17 months later there's really no way of knowing 

[Barry2954]

Sorry that it's so hard but I know what you mean. If researchers hadn't changed the name of post acute withdrawal syndrome to benzodiazepine induced neurological dysfunction I never would have worked out that my case had involved benzodiazepine withdrawal which the treating psychiatrist had chosen to cover up, likely expecting that I would recover within a year or so and there wouldn't be any evidence of what he had done.

 

The fat substitute olestra is like you describe; the onset of side effects occurs days after having been eaten so the consumer never puts two and two together to work out that the food it's in caused the problems. Nonetheless the drugs.com website has a fairly comprehensive list of side effects which are associated with each drug. It's probably best to use google to search for "drug name side effects" for each drug you were on rather than going to the site, since searches there are awkward. There are two lists on each drug. The first is just a standard explanation of side effects and the list further down, for healthcare professionals, often has more detailed explanations. I recommend checking both the nervous system and musculoskeletal sections in the healthcare professional section for each drug; I couldn't see anything with a quick look but I likely missed things which you might notice regarding other correlated side effects.

[manymoretodays]

2 hours ago, Doctorsrcrap said:

There's really no way of me working that out when you look at my med history. Your guess is as good as mine. I could work it out if it started straight after stopping perhaps but when it shows up 17 months later there's really no way of knowing 

 

Literally, a pain in the butt, or burning.  I don't know if you searched yet, on site......but here's what came up:

What is happening in your brain?

Down at the bottom under the addendum section.

ADDENDUM

 I got a great PM from a buddy asking "What about the physical symptoms of pain?" - and think it deserves some theoretical attention.

I want to take some time to add some theories about PAIN and physical symptoms such as burning, akathisia, and tingling, prickling, and things that happen during recovery of this nature.

 

......could be a sign of nerve regeneration, which is good.

 

and Paresthesia: pins and needles, numbness, tingling, burning sensations aka neuropathy

(this one has a few more links to similar topics in the first post)

 

I did find where someone found relief with neurofeedback........something you could search for locally?  Or maybe you've tried?

 

It very much could be a sign of regeneration and healing, and part of the long drawn out WD picture for you.  Not much help at the moment, I'm sure.  Do feel free to post on any of those topics too, especially when you do start to feel some remittance of this nasty long lasting symptoms.

 

And best Dc, L, P, H, and G,

mmt

Edited June 3 by manymoretodays
checking links

[Doctorsrcrap]

The doctor wants me to take amitriptyline. I've been having a real struggle with this idea. I really really don't want to but I also can't deal with the pain anymore. 

If I do it I want to start at a low dose but I'm worried I'm reading it wrong. Can I dilute 10mg pill in water and then juat take 1mg to test how I react? 

I could really do with some guidance

[manymoretodays]

Yep. 

Tips for tapering off amitriptyline

Making your own liquid suspension of amitriptyline

A liquid preparation of Amitriptyline could be made simply by dissolving the tablets in a specific volume of water. (It is also soluble in ethanol, see below.) If you make your own liquid, you will want to use an oral syringe for precise dosing. See How to make a liquid from tablets or capsules

 

And then, do go to the link, as there is more about stability in suspension below that section.

 

7 minutes ago, Doctorsrcrap said:

Can I dilute 10mg pill in water and then juat take 1mg to test how I react? 

 

And yes, that would give you a 1 mg/1 mL suspension.

 

Sending hope, and healing.

[Doctorsrcrap]

Thank you. My hope is to start low enough that it will help and prove its withdrawal related and then have less to try and get off of later. 

I don't know if its the right decision but at this point I don't know what else to do. 

I'm thinking its better to try a smaller dose than try and take the 10mg in one hit to start 

[Tweed9674]

29 minutes ago, Doctorsrcrap said:

I'm thinking its better to try a smaller dose than try and take the 10mg in one hit to start 

I'd be extremely scared of starting with a full dose too. I cannot give any advice about a starting dose... But if you are going to try it, starting very low seems less risky if something goes wrong.

 

Sending some love your way @doctorscrap ❤️ 

[Doctorsrcrap]

Thank you everyone. I can't believe it's come to this. 

Some people have been helped by specialist who know whst to do in withdrawal but where they find these people is beyond me. Like Amy in Angies video. She is very lucky to have found someone to help. 

[Doctorsrcrap]

I've got some people telling me to take it. Some people telling me it's a massive mistake. 

I'm so overwhelmed I just don't know anymore 

[Ariel]

Love to you @Doctorsrcrap

Breathe.

 

I keep writing to you and while I'm writing you publish a new post -- and then I find myself rewriting my post! Haha this has happened a few times already so I'm just going to go ahead and hurry up and post this one!!

 

15 minutes ago, Doctorsrcrap said:

Some people have been helped by specialist who know whst to do in withdrawal but where they find these people is beyond me. Like Amy in Angies video. She is very lucky to have found someone to help. 

 

I'm sorry, I'm not up to speed as to which specialists you have or haven't reached out to. 

Is there a reason why you haven't consulted with Dr. Mark Horowitz, or maybe you already have? 

It seems like he would be a good choice for a qualified opinion. 

And you've tried reaching out to Angie Peacock, right? (To talk to Angie, I mean, not Amy.)

Do I remember correctly you felt the wait time was too long to get to talk to Angie? 

 

We support you no matter what <3

 

And if you do want to wait a while, that's completely fine. 

I've been holding off on weighing in with my personal PAWS pain experience because I don't want to confuse or overwhelm -- so maybe I'll just ask you -- is this something you'd like to hear about? 

 

In regards to amitryptiline, I agree with what's been said, start as low as possible, even like 0.1 mg. 

Better to start way too low than even a little too high. You can always gradually work your way up as needed. 

It seems to me the first order is to test whether your system can tolerate the drug at all; second order would be whether the drug has the intended effect of alleviating the pain symptom. 

 

I'm so sorry you're dealing with this. 

I trust you when you say you've tried everything and exhausted all other non-drug options.

You know best, only you are in your body, only you know what you're going through. 

 

Oh, and maybe this is obvious, but have you been keeping a daily symptoms journal? Tracking pain intensity on a scale of 1-10, as well as tracking other symptoms? 

If it were me introducing a new drug to the mix -- before making that change -- I'd keep a detailed daily symptoms log for 7-10 days to establish a clear pre-new-drug baseline. Then of course continuing the journal upon making the change. Just to stay organized moving forward in terms of anything that might arise. 

 

We're all rooting for you!

In solidarity and support <3

Ariel

[Doctorsrcrap]

@Ariel

I couldn't get an appointment with angie for a month and I need to do something sooner than that. I thought I had heard bad things about Mark Horowitz but maybe I am wrong? Am I thinking of someone else? 

Yes, please tell me your pain experience. I'm all ears. 

 

I've tried, magnesium, fish oil, hot packs, cold packs, massage, chiropractor, oesteopath. And obviously some pain meds which did not work. 

 

If there is any other option than I'm all ears but I don't know anymore. I'm so desperate 

[Ariel]

Hi there dear @Doctorsrcrap

Sending you a big hug! 

 

Quickly -- I have only ever heard very good things about Dr. Mark Horowitz! 

He offers (virtual) academic consultations for a fee, regardless of location. 

I think he's based in England (not sure), which it looks like you are, too? 

If you are in indeed both in the same country, it's possible he's licensed to prescribe where you are; otherwise, if he's licensed in a country other than the one where you are, it would be the academic consultation route. 

 

Here's his website: https://markhorowitz.org

 

SA member ScaredDad, who's been having a very rough go of it, has recently posted in his topic about having had a consultation with Dr. Mark Horowitz. In case you'd like to reach out to ScaredDad about what that call was like? 

 

Dr. Horowitz co-wrote the recently published Maudsley Deprescribing Guidelines, so he's probably one of the world's foremost experts on these drugs and how to navigate them and WD. Moreover, Dr. Horowitz is one of us -- you can read his personal bio on his website. He's conducting an ongoing very careful, gradual hyperbolic taper himself. 

 

If there's any way you can afford it financially, I'd encourage you to speak with Dr. Horowitz. 

ScaredDad had his family sit in on the call, which also sounds like a great idea. That way you could delegate someone to take notes, or maybe you could get Dr. Horowitz' permission to record the session so that you have the info for later. 

 

As for Angie, I understand a month feels like a long way off right now. Have you considered simply booking the appointment anyway, and having it scheduled -- and then when the time comes, if you don't feel like it, you could cancel? Just to have that as a back-up. 

And also, even if you do try the amitryptiline between now and consulting Angie a month from now, I imagine there could still be plenty to talk about. If you do decide to give amitryptiline a go, it will still probably be a process of gradually testing it and very, very carefully titrating up as needed (unless there's an immediate bad reaction, in which case I suppose you'll know quickly). So even in the case that amitryptiline is attempted, started, and does not cause adverse effects, it will take time to hold in between potential changes (just like with a taper, one change at a time, then holding; keeping it simple, slow, stable; tracking and assessing drug influence, etc.) -- and a month will pass sooner than you know. 

 

Okay, that's my two cents about the consultations -- in summary, I'd say book them both! 

And prepare questions in advance, so that you know exactly what it is you want to get out of each session. 

 

I'll get back to you to share my personal experience in another post. 

 

[Ariel]

@Doctorsrcrap

 

A few questions for you:

 

What WD symptoms are you experiencing besides the pain? 

 

What are your days like? Are you working? Housebound? Do you have any activities (errands, hobbies, duties/obligations)? 

 

What non-drug coping skills do you use to manage other (not pain) WD symptoms?

 

I think I read earlier in your thread that you said you have a good support network, that your family supports you. 

Is this correct?

Do you have company during the day and at night? Do you live with people, pets? 

 

What is your daily life like?

[Doctorsrcrap]

@Ariel

As the pain ramped up some of my other well known symptoms started getting a little better. Very weird. Although my old symptoms were dire they were a breeze compared to this. 

My symptoms currently

Pain

Fast heart rate

Tinnitus x100

Scratchy throat 

 

I had a bit of a life going before the pain started. Sure things were still horrible but I was scraping together a bit of a life. That's all gone now. 

[Ariel]

Hi @Doctorsrcrap

 

4 hours ago, Doctorsrcrap said:

As the pain ramped up some of my other well known symptoms started getting a little better. Very weird.

 

First and foremost, this is actually a good sign! Healing is happening <3

It doesn't strike me as weird. Sounds like a normal part of the non-linear windows and waves healing pattern we experience in WD. 

Overall, I'd say this is encouraging. 

 

4 hours ago, Doctorsrcrap said:

I had a bit of a life going before the pain started. Sure things were still horrible but I was scraping together a bit of a life. That's all gone now. 

 

I hear you that the pain is very difficult. I'm sorry you're going through this. 

 

And I wonder: 

 

4 hours ago, Ariel said:

What non-drug coping skills do you use to manage other (not pain) WD symptoms?

 

AND

 

What cognitive non-drug coping skills do you use to manage your experience of the pain symptoms?

 

5 hours ago, Doctorsrcrap said:

I've tried, magnesium, fish oil, hot packs, cold packs, massage, chiropractor, oesteopath. And obviously some pain meds which did not work. 

 

These can be categorized as physical, external interventions, most of them local/topical and symptom-specific.

 

WD-related chronic pain is often nociplastic pain (more on that below), which is not the same as a sore muscle to be addressed locally, but more about helping the brain/nervous system as a whole. That's why in such cases we benefit from a holistic approach. 

 

Do you practice holistic cognitive/mental/emotional/psychological non-drug coping methods, such as: 

- accept (AAF acknowledge - accept - float)  

- distract 

- change the channel

- gentle yoga, e.g. legs against the wall 

- gentle movement/exercise

- mindfulness/meditation

- vagus nerve toning exercises 

- self-compassion meditation 

- body scans / progressive muscle relaxation technique

- managing emotional spirals

- gratitude journaling/lists

- anti-inflammatory, gut/microbiome-supportive nutrition (to facilitate that happy gut-brain connection and communication!)

etc.

?

 

*

 

Basically, in my case, I've been dealing with WD- and PAWS-related chronic pain for years. I got all the medical tests and scans, everything came back negative. I concluded and accepted the pain was WD-related (nociplastic pain related to central nervous system sensitization). Over the counter pills didn't help. I didn't want to take psych drugs for this. 

 

What has helped me has been educating myself about chronic pain -- what is it, different types, how to live with it, how to manage it with various non-drug techniques -- and then experimenting with applying that information to my daily life, and practicing practicing practicing. This holistic approach has helped me enormously, and, along with any other healing that organically occurs over time, has made a positive impact on my experience of chronic pain. 

 

I have also at times benefitted from some very gentle biodynamic craniosacral massage therapy treatments. 

 

At one point I found a physio-/ physical therapist (PT) who understood chronic pain / central sensitization syndromes such as fibromyalgia, ME/CFS, etc. I've never talked about WD with practictioners but have often used fibromyalgia and CFS as sort of litmus test code words to check the practitioner's attitude and approach to handling chronic pain clients. If they seemed to have an understanding of CNS issues/sensitivities, and a gentle, holistic perspective, I'd be more willing to give them a try. So this PT I found had good training and was quite intuitive; she was also schooled in a method called Z-Health, a neuroscientific "brain-based" approach to movement. Together we were able to creatively apply and combine various elements to play around with what worked; a lot of what we did together was exploring ways to confuse/distract nerve signals, similar to what's described in the What's happening in your brain? topic that @manymoretodayshas shared with you. 

 

An easy way to confuse/distract nerve signals yourself, in addition to the hot/cold packs you've already tried, could be something like using an electric toothbrush on parts of your body where sensations are intense; alternating sauna (heat/very hot shower/bath) and ice cold showers/plunges; gliding a feather/fork/comb/soft textile over skin; anything that changes/elicits sensations. Get curious and play around! 

 

Here's the thing, DRC: if you do want to remain drug-free (and that's your choice either way), you're going to have to work on your mindset and really lean into the non-drug coping skills for managing the psychological aspect of this experience. Fear and anxiety keep the nervous system in high alert, and that will intensify the experience of pain, because your brain/body's alarm signals are firing in reaction to perceived danger. So in order to help ourselves through, it's all about communicating to ourselves and our brains/bodies/nervous systems that we are safe; and facilitating feelings of safety through gentle, supportive practices.

 

Negative thinking habits such as catastrophizing, black-and-white / all-or-nothing / always-never / binary thinking, etc., do not serve us; in fact they can intensify the experience of pain because they cause our internal feedback to register danger and react in distress. We have to be so loving and gentle and tender with ourselves and the way we talk to ourselves -- the way one would speak to a beloved child -- in order to self-soothe. A constructive attitude is not optional, it's key! 

 

There is a funny thing about the brain: it cannot simultaneous be in fear mode and curiosity mode. This affords us the opportunity for a very useful self-hack, namely to notice when we are afraid (anxious, spiraling, catastrophizing, etc.) and consciously switch to being curious and wondering and musing and inquiring and experimenting. When we do this, we move out of fear mode and into curiosity and openness, which in turn does very good things for our nervous systems, telling them we are safe and instantaneously inviting a calming/disarming response. This is something we can cultivate to our advantage and use for many aspects of WD, incl. the experience of chronic pain. 

 

In addition to all of the above, I've updated the chronic pain help topic with some informative videos, will post link below. 

You can also look up videos and resources on your own by searching not only for phrases like "chronic pain management" but also "fibromyalgia" or another term related to any chronic pain condition. There's a lot of inspiration and practical advice/techniques to be found across diagnoses -- put on your snazziest explorer goggles and dive right in!

 

The good news is there are so many options available to us for managing chronic pain without drugs!

WD is temporary, it passes, our symptoms get better in time, and we heal.

Healing is happening all the time, even when we don't consciously perceive it. 

 

What has helped me has been to get informed (podcasts, articles, youtube videos, all kinds of resources about chronic pain phenomena, incl. a wide range of personal stories of people who have overcome many different types of chronic pain, as well as people who live with chronic pain and have adapted their lifestyles accordingly); learn; and practice practice practice. It works!

 

And, as always, remember: healing is happening. 

WD is temporary. This too shall pass. 

It gets better <3

 

In solidarity and support, with love to you,

Ariel 

[Ariel]

I've updated the chronic pain help topic in your honor @Doctorsrcrap

There's plenty of great information here to get you started:

 

 

[Barry2954]

8 hours ago, Doctorsrcrap said:

The doctor wants me to take amitriptyline. I've been having a real struggle with this idea. I really really don't want to but I also can't deal with the pain anymore. 

If I do it I want to start at a low dose but I'm worried I'm reading it wrong. Can I dilute 10mg pill in water and then juat take 1mg to test how I react? 

I could really do with some guidance

I know what you mean about doctors wanting to keep prescribing you psychiatric medications. I managed to get away from the psychiatrists over ten years ago and it still took me five years to get over the worst of the damage which they had done to me while I continue to have serious health issues after a decade from when they started treatment. The last thing that I would want is to ever have anything to do with them again. Years ago I watched my karate instructor use acupressure to induce both crippling pain and relief for that pain so I know how much that can help. Acupressure and acupressure are both based on the same principles so should both help. I assume that you have tried either physiotherapy for lumbar traction or chiropractic for spinal manipulation, since I have used both in the past myself before I discovered the glucosamine and then that the gluten allergy was the underlying cause of my sciatica.

[manymoretodays]

11 hours ago, Doctorsrcrap said:

The doctor wants me to take amitriptyline. I've been having a real struggle with this idea. I really really don't want to but I also can't deal with the pain anymore. 

If I do it I want to start at a low dose but I'm worried I'm reading it wrong. Can I dilute 10mg pill in water and then juat take 1mg to test how I react? 

I could really do with some guidance

Hey there.  I meant to say above, if you dilute the 10 mg tablet in 10 mL water, then it will be 1 mg/1 mL, and easy to work with.  You could start really low if you wanted, the others had good advice.  It's not exactly like if you were reinstating your original drug off.  I think your doc wants to try the amitryptiline for pain.  Yet still.......best to go cautious with any AD, psychoactive anything now, since you have been thrown into WD and all the destabilization that goes with it.

 

I think Mark Horowitz and Outro are available to those in Canada, and more recently also in California, U.S.  He might respond to an email.  And I've heard he's excellent.  I've only seen him on video.

May be available in other areas as well, I don't know.

Excellent stuff @Ariel, that you are finding, as well as organizing.  Thank you so much.

 

Update tomorrow Dc. or later tonight......I think we're on different time zones......when you can.

 

L, P, H, and G,

[Doctorsrcrap]

I try to walk fir exercise and do exercises like stretching. They haven't helped. Cold water showers too. I do try to distract and it worked for others symptoms but not for this.

I find it awful to read that people ten years later are still having problems now. I thought we all healed?

 

[Barry2954]

3 hours ago, Doctorsrcrap said:

I try to walk fir exercise and do exercises like stretching. They haven't helped. Cold water showers too. I do try to distract and it worked for others symptoms but not for this.

I find it awful to read that people ten years later are still having problems now. I thought we all healed?

 

Most will but I argued from the start that my condition didn't commence with the psychiatric side effects. The psychiatrists simply chose to ignore everything I told them about toxic work exposures and exertional workplace stress having caused severe muscle damage. So it wasn't until five years ago that, with the help of a GP, I was diagnosed with the resulting autoimmune myopathy called myositis. Once you start combining misdiagnoses and incorrect treatments with the resulting side effects you never know how much damage results or the lengths to which doctors are prepared to go to cover up their, and their peers, screw ups.

[Doctorsrcrap]

The reason I kind of believe that the pain I've got could br withdrawal is because I got weird nerve pain in my foot as soon as a stopped the meds. However it didn't bother me much. Now its travelled and is affecting muscle also is impossible to ignore. 

At this point I really don't know. I did used to get a bad back from my old job but there is nothing of note on MRIs to show anything. 

It's stupid. At the end of thr day it's not my job to work out what wrong. Its the doctors 

[Barry2954]

1 minute ago, Doctorsrcrap said:

The reason I kind of believe that the pain I've got could br withdrawal is because I got weird nerve pain in my foot as soon as a stopped the meds. However it didn't bother me much. Now its travelled and is affecting muscle also is impossible to ignore. 

At this point I really don't know. I did used to get a bad back from my old job but there is nothing of note on MRIs to show anything. 

It's stupid. At the end of thr day it's not my job to work out what wrong. Its the doctors 

The trouble with waiting for doctors to work something out lies in a thing that one of the psychiatrists told me. The psychiatrist advised me that it's not a doctors job to make a correct diagnosis, it's just their job to make a diagnosis and if it's wrong then that's the patients problem not theirs. Where I live, Australia, the doctors all cover up for each others screw ups so patients can often go their whole lives with incorrect diagnoses because of one bad doctor. I've heard of the same thing happening in other places around the world, on a smaller scale than here. I hope that it's not a problem where you are but I have been forced to do all of my own research in order to work out exactly what conditions to request testing for. I've been wrong more than half the time but I now have a complete explanation for my condition and, having already registered a complaint with my local elected member of parliament, am on the verge of registering an official complaint with the government complaints commissioner with all of the evidence I have been able to accumulate. Sometimes you have to fight the medical system with whatever works locally. The legal system here doesn't back patients against doctors unless it's obvious that the world is going to know about the screw ups.

[Doctorsrcrap]

Then I honestly don't know how to get out of the mess I find myself in. This has given me even less hope to get answers to be honest. I'm not going to be able to work it out. I think I will just give up. It's not worth the hassle anymore 

[KateH]

@Doctorsrcrap I am so sorry that you are feeling such hopelessness. I hear the pain of not having an answer and desperately wanting one. I am concerned that you want to "just give up". Are you having thoughts of self-harm or suicide? If so, you must get help now, someone to talk to. Please do not give up on yourself. Please reach out to someone you trust and can support you now. You mentioned having a supportive network and family. If no one is available now, there are other resources available.  A whole community is here, to support and offer compassion and understanding. You are not alone. There is only so much, though, an online support group do....especially when feeling such despair.  Please reach out. Please. 

https://www.nhs.uk/nhs-services/mental-health-services/where-to-get-urgent-help-for-mental-health/

[Doctorsrcrap]

Thank you for your concern. How can I reach out to NHS for help? They will medicate me with drugs I don't need. If I wasn't in pain I wouldn't be desperate. I don't need the NHS saying I'm crazy and drugging me again. Its a lose lose situation really isn't it.

I'm not expecting you guys to save me. But this is the only place I feel understood 

[Barry2954]

3 hours ago, Doctorsrcrap said:

Thank you for your concern. How can I reach out to NHS for help? They will medicate me with drugs I don't need. If I wasn't in pain I wouldn't be desperate. I don't need the NHS saying I'm crazy and drugging me again. Its a lose lose situation really isn't it.

I'm not expecting you guys to save me. But this is the only place I feel understood 

The simple fact is that many, if not all, people on this site have been through something similar to yourself. I have likely given the impression that I haven't improved at all but I have. My withdrawal started in 2014. In 2017 my severe illness lessened after I received antibiotics for the leg infection which the BIND withdrawal immune suppression had induced. In 2019 the adrenergic storming gradually eased. In 2020 the severe illness started disappearing after my gall bladder was removed (the illness being caused by gallstones). During the last year my own dietary changes have gradually begun to ease my breathing issues and disability and the local hospital network which dumped me into the mental health system, when I was really severely ill, has admitted that mistakes could have been made. I'm not saying that there will just suddenly be complete remission, though it could happen. I'm saying that the symptoms don't appear in a vacuum and that our bodies reaction to the psychiatric medications can gradually become obvious to even the doctors. I found that the more physical health issues that the doctors acknowledged the more people have taken me seriously about the damage the meds caused me. It does surprise me though that the UK college of physicians has been the first to acknowledge psychiatric mistakes yet you still seem to be stuck in that same morass.

[Happy2Heal]

13 hours ago, Doctorsrcrap said:

The reason I kind of believe that the pain I've got could br withdrawal is because I got weird nerve pain in my foot as soon as a stopped the meds. However it didn't bother me much. Now its travelled and is affecting muscle also is impossible to ignore. 

At this point I really don't know. I did used to get a bad back from my old job but there is nothing of note on MRIs to show anything. 

It's stupid. At the end of thr day it's not my job to work out what wrong. Its the doctors 

 

 

you're right, it IS the drs job to figure out what is wrong, not yours!

You've had back pain since January, it is now June. 
personally I don't know that I'd put this all down to WD- sure it could be, but maybe not.  

Things don't always show up on an MRI. 

what other tests have been done?
have you seen a rheumatologist? there are so many different conditions that can cause pain, if I had pain for as long as you have had, without any let up, I would requesting full work ups  and if one dr didn't help, I'd go on to another one.

 

I don't know how your health system works. Is it possible to request a certain kind of dr?

 

 

 

 

on a totally different subject, do you still have pet rodents?

 

 

 

 

[KateH]

10 hours ago, Doctorsrcrap said:

this is the only place I feel understood 

I hear you, @Doctorsrcrap. You are right, no one can save you. But, you can save yourself. You can ask for help, you decide your next steps, not anyone here or in the NHS system. You are at a crossroads, not alone, yet alone in discerning what the next right thing is to do or think.  It is up to you. You have agency, you can say no to being drugged. But, some things might be helpful (many of them voiced here) to which you can yes. 

 

11 hours ago, Doctorsrcrap said:

Thank you for your concern.

As a healthcare professional and C-PTSD survivor, I am deeply concerned. I have no answers or suggestions on the next steps for you. It might be helpful to re-read the posts from members of this forum. Many words of wisdom, support, and insight can be garnered from our fellow travelers. It might be helpful to reach out to a professional who can be a compassionate witness to what you are going through. I hope that you will find the advocate within and keep going. 

[Doctorsrcrap]

@Happy2Heal

I have seen 2 neurologist and currently seeing a rheumotologogist. The rheumotologist has requested a bunch of blood work. Nearly all of it has come back normal. Just waiting for a few more to come back from the lab. Waiting fir the results of my last MRI too.

Yes I still have 2 rats 

How r u?

 

@KateH

I have reached out to so msny people for help theres not really anyone else to ask for help. 3 GPs. 3 specialists. Oesteopaths. Chiropractors, 2 physiotherapist. Maybe I sound like I haveny been trying but that is absoloutly not thr case. 

[Happy2Heal]

5 hours ago, Doctorsrcrap said:

Yes I still have 2 rats 

How r u?

aww I don't have any pets now, I am not allowed to have them in my new place

I miss my mice and rats SO much!! how are your ratties doing? are they boys or girls?

I like to go back thru the videos I made of my rats and mice when I am missing them.

Right now I'm trying to befriend some wild chipmunks. I go out and sit on a big rock and watch them- I ordered some peanuts in the shell, I want to see if they'll take food from me. They seem pretty friendly

I also put an App on my phone that identifies birds-it's called Merlin. You record the birds in your area and it will tell you what they (probably) are. 
it will highlight which bird is calling/singing too, so I'm learning to identify them by that.
Most of them I can't see at all- either hidden in the trees, grass, bushes etc or too small or too far away. 
I want to get some field glasses though so I can try to spot some of them.

It's a lot of fun

 

do you live in an area that has lots of wildlife?

 

I'm ok, thanks for asking! 

 

 

[Doctorsrcrap]

Is CBD oil a big no no?