Doctorsrcrap: can't cry and frustrated

[Catina7]

4 hours ago, Doctorsrcrap said:

I think I spoke to them before. Without even given me an assessment they prescribed gabapentin, ompeprazole and something else! Crazy! 

I don't understand why no one can tell me what the hell is wrong 

 

That's insane!  I'm sorry they weren't helpful.

 

I'm thinking that if no one has been able to find anything, then it must be related to the withdrawal somehow;  that's the only thing that makes sense.  And you've tried an acupuncturist too?  You probably have.

[Doctorsrcrap]

Yes I have and massage! 

I've literally tried everything.

It's crazy and costing me and my family a fortune. 

I'm going to have to try the amitriptyline because I can't function like this. I need some relief. I hope it works. 

I know things can get worse before they get better with b12 injections but I'm still not confident it's that. But I'm low on a few things. My only other guess is complex nerve entrapment but not a lot of people specialise in it. Maybe I've held all my tension from stress in my pelvis and that's why I have pain in the buttocks. I have no idea. The not knowing is killing me. The pain is killing me. And the more appointments I go to and the more I don't knows I get a little bit more of my strength to fight diminishes. 

I just want my life bsck. I have such a wonderful family and husband and I want nothing more than to be able to enjoy my time with them. I'm not asking for loads of money, holidays a big house anything like that. All I want is a pain free existence to enjoy my time with my wonderful family whilst I can. 

[Catina7]

Can't doctors do something like a nerve block?  Have you looked into that at all?

 

You do have so much to live for, so keep fighting and persevering as best as you can.  

 

Big Hugs,

Catina ❤️

Edited August 9 by Catina7

[Barry2954]

I'm glad to hear that you don't have diabetes but this doesn't preclude the possibility that you might have insulin resistance, which often has similar consequences. Doctors generally don't have a clue what to do when it comes to this condition. I have long fallen into the category with doctors sometimes being absolutely certain that I should have diabetes despite what test results kept telling them. This was long before my health collapsed and I was still able to work, weight train, do martial arts, and so on. Some people's bodies just seem to be able to handle the insulin resistance without actually becoming diabetic. Because doctors rely on their textbooks to tell them which health conditions are related health issues like insulin resistance, and many other causes, can fall through the cracks without being recognised. This article describes this as prediabetes and relates it to peripheral neuropathy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5583955/ One of the things to look at with this is your lactate or lactate dehydrogenase levels. If they get too high it can mean that your cells are using anaerobic respiration for production of energy. I have this, as a consequence of medications, but without the neuropathy.

[Tom2020]

Why not try the Mayo Clinic? They have world-leading experts and I hear the way they treat people is first rate. The have a branch in London https://www.mayoclinic.org/departments-centers/international/locations

[Doctorsrcrap]

@Catina7

When I went to pain management I asked about a nerve block. He said he has no idea what nerve would need to be blocked and I would just be a pin cushion and he can't just go round injecting all over the place. So I wasn't allowed one. No diagnoses, no treatment. 

 

@Barry2954

If the doctors no absoloutly nothing about anything how the hell am I supposed to get treatment or get better. I have no idea what I'm doing! I agree when you Google burning where I have it it does sound a bit like diabetic neuropathy but if doc thinks I'm not diabetic what am I supposed to do about it? 

What do you do about it? 

It also sounds like it could fit with pudundel neuralgia. Now If it is that I'm a stuck with this pain because no one knows how to deal with it. Unless someone else knows who the hell I can ask. But most people say they have to live with it. Well I can't. A couple of people have said it could still be the b12 defiecines etc. But to be honest I don't have it in me to keep guessing. I can't help myself if I have no idea what the problem is. Its not like I haven't had extensive testing but everytime I test something it's more disappoint.

 

@Tom2020

Thanks for the recommendation but I've already seem top specialist in thier fields paying privately for all this other testing and still I've got no where. Would the Mayo clinic turn out to be another big fat waste of time. Is it just more moronic doctors who don't know anything. 

 

Apparently not a lot of people know anything to do with the pelvic nerves as it's very complex. 

I spoke to my GP yesterday and I asked can't be trial a pudundel nerve block as a diagnostic tool. He said I have no idea what that is or how it works. I said how about a nerve conduction study? Can I get a refferal for that. He said oh gosh I don't know if you can do that on buttocks or who does it. 

See what I have to put up with? 

I have been given a prescription for tramadol. It's very tempting because I want out of this pain but I'm also too scared to take it. I still have the amitriptyline here that I can try. 

What do I do? 

[Barry2954]

You ask what I have done. Because I was being accused of faking my ill health and disability by doctors I searched through all of my old medical records, which my brother and GP had obtained for me, and did my best to identify any anomalous results which could possibly show a pattern to what was happening in me. I noted down all of my symptoms, which was complicated because I was concurrently suffering from gallstones, autoimmune myositis, severe benzodiazepine withdrawal, and sertraline induced adrenergic storming. Once I had done my best to try to identify possible explanations for my condition I then asked a GP if there were any GP's that he knew of who were proactive in helping to identify health issues in their patients. Luckily he gave me a name. I then wrote to that GP, explaining my situation and requesting his help. Again, luckily he accepted me as a patient and helped me with running a number of tests for possible conditions;  all of which came back negative. However, as we were both close to giving up, he suggested that a lot of my early symptoms could have fit the pattern of a respiratory infection. At home I contemplated this and crossed off all of my symptoms corresponding with those of respiratory infections and then started researching online the remaining symptoms. What kept appearing was the autoimmune myositis. He had me tested for it and it came back positive. Even then he found it almost impossible to get me further investigations for my condition because of the claim that I was faking everything.

 

Nonetheless, with immense perseverence, I have managed to obtain enough investigations that I have been able to present a strong case against the psychiatrists and doctors who misdiagnosed and maligned me, denying me needed medical investigations as well as against the psychiatrist who commenced the claim that I was faking everything at a time when he was ignoring my adverse responses to the psychiatric medications. Doctors are just people; they screw up and aren't perfect. Some of them try harder than others and those are the one's you really need if you are going to even hope to get an appropriate diagnosis.

[Doctorsrcrap]

@Barry2954

Well I don't know where the hell I am supposed to find such doctor. I've tried and tried and keep failing at every turn. I don't know who I'm supposed to turn to now. I don't know what's wrong with me. I do nothing but research and get no where. 

[Barry2954]

One option is look at patient reviews of doctors online or when you happen to see specialists try asking them if they know any proactive GP's.

[Doctorsrcrap]

I don't understand that? How can you ask if a GP is proactive? Shouldn't they all be proactive?!

[Barry2954]

Also, chat with nurses, they often discuss which doctors are really good. Of course if you happen to know someone in legal circles you can also ask them since they know the good one's as well as the one's who get sued a lot.

[Barry2954]

It has been my long experience that most doctors these days have entered the profession for the money and prestige and not to try to help their patients. Some actually just see patients as annoying nuisances who they have to put up with as part of the job.

[Doctorsrcrap]

But I don't understand. You canr just walk into the surgery and say give me the name of a proactive doctor. They will be like what are you trying to say?! 

[Barry2954]

I was diplomatic and asked the GP whether he knew of any doctors who helped with complicated cases like my own.

[Doctorsrcrap]

Oh I see. Well seeing as mine doesn't even know what a nerve conduction study is I doubt he would be able to recommend anyone to me 

[Catina7]

Hi @Doctorsrcrap, I don't know if you have a Facebook account or not, but another suggestion I have is to search for any Facebook groups for people who are suffering similar issues.  They can be a great resource for information and support.  

[Doctorsrcrap]

@Catina7

I did that and only found peiple who said they dont know what causes thier pain or if they do its irreversible! 

This has made me more stressed 

[Catina7]

10 minutes ago, Doctorsrcrap said:

@Catina7

I did that and only found peiple who said they dont know what causes thier pain or if they do its irreversible! 

This has made me more stressed 

 

Okay, I see.  Sorry that avenue didn't work out for you, but at least you tried.  

 

Have you thought about seeing a homeopathic provider?  I have a friend who is one if you're interested. 

[Doctorsrcrap]

Is that different to all the other people I've seen? Let me list them.

. Rheumotologist

. Spinal surgeon

. Neurosurgeon

. Pain specialist

. Pain clinic

. Oesteopath

. Chiropractor

. PT

. Pelvic PT

. Herbalist 

. Gastroenterologist 

. Gynocologist 

. Massage therapist

[Ariel]

@Doctorsrcrap

 

25 minutes ago, Doctorsrcrap said:

Is that different to all the other people I've seen? Let me list them.

. Rheumotologist

. Spinal surgeon

. Neurosurgeon

. Pain specialist

. Pain clinic

. Oesteopath

. Chiropractor

. PT

. Pelvic PT

. Herbalist 

. Gastroenterologist 

. Gynocologist 

. Massage therapist

 

Crikey, DRC!

 

Forgive me, this list struck me as absurdly funny. It's just so ridiculous and frustrating what WD puts us through. 

I wish I were with you right now, I promise you we'd be howling with laughter. 

 

I could read this list right back to you as if it were some weird, twisted children's book. DRC on a mythic quest seeing first the one, then the next, then the next, traversing the kingdom in a chariot with custom seating that allows for glute-sparing positions. Colorful illustrations of our long-suffering protagonist with the burning buttocks, being turned this way and that by one specialist after another, everyone contorting themselves with their Fancy Titles and Degrees, bloated salaries and egos, all stroking their chins and furrowing their brows and repeating, "I don't know." It's like a nursery rhyme from hell. 

Are you with me? 

 

(By the way, the one impressive thing about these doctors you've consulted is that they apparently have the honesty and integrity to admit they don't know. This is in and of itself remarkable. I know it's not ideal, as one would wish they did know and could provide actionable solutions; but it is certainly preferable to, let's say, the garden-variety psychiatrist who says, "I know exactly what's wrong with you, and I know exactly how to fix it -- take these pills!" Much better to have someone tell the truth about not knowing than someone who claims/believes they know and prescribe dodgy, ultimately harmful treatments. Scant comfort, perhaps, but if you're ever in a count-your-blessings kind of mood...)

 

Dear, dear DRC. I'm so sorry you're dealing with this utter bullsh*t. 

I hope you understand I'm not laughing at you or your plight, quite the contrary. I feel for you with all my heart. 

 

Oh well. Might as well keep adding to the list!!

Acupuncturist

Biodynamic craniosacral therapist

Children's book author

Comedian 

 

So much love to you, 

Ariel

 

[Doctorsrcrap]

I forgot to put accupuncture down

[Ariel]

14 minutes ago, Doctorsrcrap said:

I forgot to put accupuncture down

 

Lol oh dear 

-- and how disappointing that acupuncture didn't help, I would have hoped that might be a possibility. 

You have certainly been thorough <3

I wish you could join me for some afternoon tea and we could watch some hilarious and mind-numbing telly and have a proper laugh and mutually distract each other. 

I'm sorry you're going through this, DRC. 

Hugs 

[Doctorsrcrap]

There's no where left to turn. 

[Ariel]

1 minute ago, Doctorsrcrap said:

There's no where left to turn. 

 

I can certainly understand how it could feel that way given the circumstances. 

I'm sorry you're suffering <3 

You are very brave!

Sending you all my love and support,

Ariel

[Doctorsrcrap]

I'm a lot stronger than I ever knew but I've now reached my limit. I have no more in me 

[Catina7]

1 hour ago, Doctorsrcrap said:

Is that different to all the other people I've seen?

 

Yes, a homeopathic provider is different and not on your list.  

[ShantyO7]

I know you are frustrated, but you can't be the ONLY person to have this happen. And there HAS to be a dr somewhere that can help you. Unfortunately, it's like finding a needle in a haystack but please just don't give up! Praying you will find the right dr and get some answers!

[Barry2954]

The best that I can suggest, if you can't get help from doctors for whatever reason, is to try a complete microbiome cleanse. It likely isn't the standard way to do it but I used antibacterials like olive oil (preferably high phenol content and cold pressed), rice bran oil, avocado oil, cloves, oregano, garlic, onions, and their like to try to reduce levels of pathogenic bacteria inside me. I have also been eating a lot of prebiotic foods such as onions, apple, asparagus, chickpeas, some cruciferous vegetables, capsicum, mixed spices, curry powder, ginger, and other spices, to try to encourage growth of the healthy bacteria. I eliminated all dairy, gluten, and as much sugar as I could from my diet as these help to feed pathogenic bacteria. A dysregulated microbiome can underlie neuropathic pain and I have been recently wondering whether this may be due to it directly and indirectly being responsible for raising the bodies levels of ammonia.

[Doctorsrcrap]

The only problem found with my gut microbiome was low pancreatic enzymes. 

Waiting for my CT scan results of my pancreas to see if this is of any significance 

 

[Barry2954]

It's complex, with much of the research only being recent, so clinicians are likely still years behind the research. It all involves microbial production of trimethylamine (TMAO); a form of ammonia in which the hydrogen groups have been replaced with methyl groups. This essentially contributes to overall ammonia levels without actually altering those levels in tests since it isn't actually regarded as ammonia.

[Doctorsrcrap]

I literally don't have the energy or capacity to understand these complex things. I need someone to help me. I shouldn't be having to work all this out myself. I can't concentrate through the pain. It's to much. And everything is always oh well the doctors don't actually run the right tests or doctors don't know anything about this particular thing etc etc. I don't see how anyone is supposed to ever feel better when no one knows anything. 

[Catwoman73]

Hi @Doctorsrcrap- I love the name by the way... it gave me a chuckle, which is always a good thing around here.  Anyway, dropping in just to see if there's anything I can offer!

 

I am so very sorry for your struggles.  You truly sound like you're at the end of your rope.  You'll have to forgive me- with my own brain fog, I simply can't read through your entire thread- can you give me a short description of your current symptoms?  I can see you've seen a lot of doctors who have found nothing already- I used to work in medicine, and want to put my fresh, withdrawal-informed eyes to your case, just to see if I spot anything that everyone else might have missed.  I know it's a Hail Mary lol, but it's worth a shot.  You don't have to recount your whole history- I can certainly see it in your signature already.  You've had quite a time of it! Just the symptoms you are currently suffering from.  I can see burning in the gluteal area... anything else?  And when exactly did this start?  And can you give me some idea how long you've been taking each of your supplements, why you are taking them, and what doses you are taking?  Take your time- I know that sounds like a lot when you feel like garbage.  

 

There is certainly a chance that this IS all withdrawal-related.  But I really hope that if that is the case, we can all continue to support you through this journey.  It's so, so damned hard, I know. Sending lots of love and hugs your way... ❤️‍🩹

[Tom2020]

18 hours ago, Doctorsrcrap said:

I've already seem top specialist in thier fields paying privately for all this other testing and still I've got no where. Would the Mayo clinic turn out to be another big fat waste of time.

It might not help but then again it might be just what you need. It would be good to get a another opinion since as we know doctors don't always get it right!

[Doctorsrcrap]

@Tom2020

Isn't thr mayo clinic only in america? 

 

@Catwoman73

Thanks for reaching out. 

It started with what felt like a urine infection in early December. Which then became feeling like I was on my period even if I wasn't. Then it turned into back pain. A crushing like back pain. By March it started to spread to my backside. I noticed that as soon as I sat down it would start to ache like I had been sitting down for hours. Fast forward to today my buttocks ache as soon as I sit down like. It's like the padding does nothing and then the unrelenting burning pain starts. Even laying on my back makes my buttocks burn. It's also starting to spread down the back of my legs. 

I had blood tests run and my GP said I was OK apart from vit D deficient. But I had a borderline low actuve b12 back in last August. After supplementing for 6 months I retested and my serum b12 had shot up but my active b12 was even lower. From what I had read here from alto this was bad news. GP said she had no idea what active b12 was and everything is in my head. I found an aneamia specilast who looked at my blood work and said they disagree with my gp. That my active b12 showed I was b12 deficient. And I was also iron deficient. Eventhough my ferritin is fine my ferritin saturation is low which is apparently the important number to look at. He also said my folate was inadequate and my vit D a shambles. 

My pain is my biggest concern. I can not live in this pain. 

My problem is I have researched to the death and I can't find anyone with b12 defiency who has this symptom. I don't think any of the other defiencys would cause it either. But no one on here or any of the withdrawal coaches I have spoken to have ever heard of such symptom either. 

Which leaves me with no where to go 

[Catwoman73]

I'm so sorry you've been gaslit by your doctor.  It makes me sad that this is what the medical profession has come to.  Rather than digging deep on treatment resistant conditions, they just tell us that it's all in our heads.  

 

Does any of this sound like what you are experiencing?

 

https://www.sports-health.com/sports-injuries/leg-injuries/symptoms-chronic-high-proximal-hamstring-tendinopathy

 

It can be extremely debilitating, can affect the glutes, hamstrings and back.  If this sounds like you, an assessment by a good, old fashioned physiotherapist might be worth trying.  It can be a tough road to heal, but at least it would give you something to work towards. 

 

B12 deficiency can absolutely cause nerve pain as well, particularly in the lower limbs.  Tell me about your supplementation- are you taking methylated B12?  They tend to be absorbed better.  Have you been worked up specifically for pernicious anemia and other autoimmune causes  of low B12?  Autoimmune conditions can certainly overlap with one another as well, so this certainly could overlap with the pain issues.  

[Doctorsrcrap]

I've seen two physical therapist. None of them know what the problem is. And surely one of my 4 mris would have found the problem? 

Yes b12 can cause nerve pain but I cwnt find any literature at all that states it can be in the backside. 

Could that be from the vit d deficinecy? I have no idea. 

I'm waiting for my gastroenterologist to tell me if there is something wrong with my pancreas or not. They have ruled out chrons. I'm self injecting hydroxcocobalin b12 twice a week. So far they have done nothing to help. 

I don't know what to do. I took tramadol last night. Not even that took away the pain