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Symptoms now seem static - and annoying - anyone else?


[ma...]

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Hi all (again),

Over the past 3 weeks or so my symptoms seem to have fallen into a pattern. But they are not improving (indeed some are slightly worse), but I am very early in my removal of Diazepam. If anyone has had these it might help my health anxiety reduce...which is rampant now (despite blood tests, imaging, more blood tests, more imaging):

Tinnitus - absolutely screaming mainly feels like left ear.

Tight jaw and face pain along with all my teeth hurting.

Feet and Hands regularly freezing cold and look it! 

Incredible sensitivity to the sun and/or any heat. My face is red a lot of the time and feels very hot despite my freezing hands and feet! Any sun exposure and it goes off the chart red and feels immediately hot. Even sun through a cloud feels hot on me - this and the tinnitus are the most distressing symptoms.

Bloating - although being treated for SIBO as that test came back positive

Chest tightness and feel like throat is tightening too - along with a stuffy and/or runny nose

Fatigue - just feel absolutely knackered from waking up until I go to sleep

Back and hip back - all low down but for 2-3 months now it has been painful to pull my socks on!

 

I have altered my diet and also I exercise by walking most days for at least 30 mins in an attempt to stay as active as I can be. Worth mentioning I am having to CT for a number of reasons but no choice in that area (I know its not the guided way but it is all I have).

Anyone had a shopping list like above? I have seen doctors through the year and I am sick of seeing them as everything in my body has been looked at. BUT my health anxiety has gone into overdrive as the list can be easily attributed to many other diseases. It can really take over your thoughts...

Thanks all...

 

Mark

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All TOTALLY normal in this. I have almost all the ones you listed. I am 9 months out with a ton of physical symptoms still and yes-some have gotten worse, new ones have come and some have faded. 

We have to give this a good amount of time (hopefully less for you) unfortunately. Trust your test results (and I know how hard that is when it feels like you're dying). 

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So sorry you are suffering so greatly.  Everything you mentioned is typical for BIND.  I’ve experienced each one as well. Symptoms can increase in intensity, leave, come back, and new symptoms arrive. I was hit with terrible deep muscle pain in my legs in my second year. It makes no sense. 

It is just so hard to discern what is next with this whole nonlinear process. I am 21 months out, some symptoms have dropped but my hardest symptom, burning nerve pain on my head and body still remain along with the chemical anxiety.

I also have the tinnitus, jaw pain and awful neck pain.  I wear a night guard at night because I clench so hard due to body pain, stress and anxiety.  (I actually broke a tooth last year due to the clenching from pain and had to get it extracted, all because of this Benzo withdrawal!) I’ve spent thousands on tests, docs, labs, mri, neurologists and more.

i understand the health anxiety as well. I now have health anxiety because of this and I fear over any sensation and all the what if’s.  I have never gotten a window all this time so it just feeds the anxiety even more. It’s so hard when other regular health issues come on, like a bad cold, dental work, infections, etc… it’s the Benzo brain serving all the fears 

It’s just unbelievable but we just have to trust that healing will come. Baylissa reminds us that intensity of symptoms is not indicative of duration, so hopefully you will see improvement soon as the receptors heal. I’m so sorry you’ve experienced these symptoms,  I truly understand. 

You are strong and courageous and you will get through this. Keep coming here for encouragement. We are healing even when it doesn’t feel like it. You are not alone. 💕🙏

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@[ne...] @[jo...] many thanks for both your replies! It helps to know it’s not just me…just had enough at times and find it hard to believe it isn’t ‘something else’. It’s tough to CT but here I am! 

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  • 4 weeks later...

Hi @[ma...]. How are your teeth doing now?? I am also having problems with my teeth :( been to the dentist three times. X-rays don’t show anything. I hope your teeth are feeling better. This is very frustrating.

Edited by [bi...]
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On 29/08/2023 at 16:36, [[j...] said:

So sorry you are suffering so greatly.  Everything you mentioned is typical for BIND.  I’ve experienced each one as well. Symptoms can increase in intensity, leave, come back, and new symptoms arrive. I was hit with terrible deep muscle pain in my legs in my second year. It makes no sense. 

It is just so hard to discern what is next with this whole nonlinear process. I am 21 months out, some symptoms have dropped but my hardest symptom, burning nerve pain on my head and body still remain along with the chemical anxiety.

I also have the tinnitus, jaw pain and awful neck pain.  I wear a night guard at night because I clench so hard due to body pain, stress and anxiety.  (I actually broke a tooth last year due to the clenching from pain and had to get it extracted, all because of this Benzo withdrawal!) I’ve spent thousands on tests, docs, labs, mri, neurologists and more.

i understand the health anxiety as well. I now have health anxiety because of this and I fear over any sensation and all the what if’s.  I have never gotten a window all this time so it just feeds the anxiety even more. It’s so hard when other regular health issues come on, like a bad cold, dental work, infections, etc… it’s the Benzo brain serving all the fears 

It’s just unbelievable but we just have to trust that healing will come. Baylissa reminds us that intensity of symptoms is not indicative of duration, so hopefully you will see improvement soon as the receptors heal. I’m so sorry you’ve experienced these symptoms,  I truly understand. 

You are strong and courageous and you will get through this. Keep coming here for encouragement. We are healing even when it doesn’t feel like it. You are not alone. 💕🙏

Hi @[jo...], could you tell more about your teeth extraction? How did it go, did it give you any setback? Do you know what medications were used?

We're dealing with a similar issue atm.

Tia!

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