Mast Cell Activation

[[Ma...]]

I HAVE this disease. Thats why I think I know more about it than you?! And I have been diagnosed with valid tests and by specialists I even have an emergency card because of this which I carry in my pocket.

Thats why I disagree with you - I definitely have more knowledge about this desease than you do, since you googled MAC and spoke to your doctor about it.. while I have to deal with that topic on a daily basis. But hey, - okey, I agree we disagree, but you are correct, you have a right to say that.

 

The list by the way, which you found, does not list all of the symptoms, and also is made for MAC, mast cell activation disorder, but there are more than just THIS single desease among the mast cell diseases, so maybe, if you are interested in this field, you need to read more.

 

you think everyone heals. I say, we cannot know that and therefore should not say that to people who then suffer longterm and better run some tests to get the treatment they need. - this disagreement cannot be solved.

 

You said you get annoyed that these topics come up on BenzoBuddies - and I say, its important and necessary to share information to provide what people need to recover. Again, we cannot find a compromise here.

 

And I find it disrespectful to talk about Ajusta like you do, saying if she cannot tolerate meds than this or that will happen - YOU DO NOT KNOW that. Mast cell deseases are not only treated with meds and at the moment so many new methods and treatments are being developed, there is hope, for Ajusta and for everyone suffering from a mast cell desease.

But again - thats your opinion - and I have mine.

 

And thats all I will answer to you. You are talking to 2 people who are suffering from a mast cell disease and you claim to know what's best for us just because you cannot accept that withdrawal can cause a mast cell disease and you want to believe that everybody heals. Go into the protracted board and have a look. Sometimes claiming everybody heals can really really hurt people who suffer more than a decade.

 

You yourself haven't reached the 2 year mark yet..

[Guest [Su...]]

I HAVE this disease. Thats why I think I know more about it than you?! And I have been diagnosed with valid tests and by specialists I even have an emergency card because of this which I carry in my pocket.

Thats why I disagree with you - I definitely have more knowledge about this desease than you do, since you googled MAC and spoke to your doctor about it.. while I have to deal with that topic on a daily basis. But hey, - okey, I agree we disagree, but you are correct, you have a right to say that.

 

The list by the way, which you found, does not list all of the symptoms, and also is made for MAC, mast cell activation disorder, but there are more than just THIS single desease among the mast cell diseases, so maybe, if you are interested in this field, you need to read more.

 

you think everyone heals. I say, we cannot know that and therefore should not say that to people who then suffer longterm and better run some tests to get the treatment they need. - this disagreement cannot be solved.

 

You said you get annoyed that these topics come up on BenzoBuddies - and I say, its important and necessary to share information to provide what people need to recover. Again, we cannot find a compromise here.

 

And I find it disrespectful to talk about Ajusta like you do, saying if she cannot tolerate meds than this or that will happen - YOU DO NOT KNOW that. Mast cell deseases are not only treated with meds and at the moment so many new methods and treatments are being developed, there is hope, for Ajusta and for everyone suffering from a mast cell desease.

But again - thats your opinion - and I have mine.

 

And thats all I will answer to you. You are talking to 2 people who are suffering from a mast cell disease and you claim to know what's best for us just because you cannot accept that withdrawal can cause a mast cell disease and you want to believe that everybody heals. Go into the protracted board and have a look. Sometimes claiming everybody heals can really really hurt people who suffer more than a decade.

 

You yourself haven't reached the 2 year mark yet..

 

 

Ok lets regroup........I think your misunderstanding me and I'm misunderstanding you. You began to make me feel like I didn't have a voice or a right to question things or be in this discussion. i think everyone here has a voice. Ive been researching this topic for a long time now, and I've spoken to professionals about it numerous times. I have seen alot of discussions in the benzo community discussing terms such as histamine intolerance and MCAS. Not everyone in WD has an actual diagnosis of this and that it can be temporarily caused by wd.  That's why I used the example of the "common" sxs , so people could see how this gets confusing and causes alot of people to panic thinking they now have a disease. I have seen numerous posts of people with extreme sensitivities and now feel it is more common than not after being in this community for 3 years. I did state before that there are exceptions to this, and yes people do actually have MCAS. I never meant for anyone to think they shouldn't get tested, i was merely saying that when your extremely sensitive and newly off or fairly new off it could possibly be better to wait it out and see if your cns settles before putting yourself through tons of testing (that alone would rev me up immensely).  Not sure why you brought up people with alot of time under their belt, I have never stated that people should not take care of their self, they should absolutely do so if necessary and especially if they are at a certain point and don't feel the way they think they should feel. I feel you are misunderstanding me.. I have read many posts of Agusta, she seems to be extremely sensitive to alot of things as I am and why I relate to her, and why im trying to give her my opinion.  She has posted that she has extreme responses to medications and stimuli as do I. To my knowledge she is asking questions about MCAS and does not have an actual diagnosis. Is that incorrect?  I agree things DO happen during wd, life goes on, people do get issues that need to be addressed and ignoring them would be careless, people also still have preexisting problems,  People get extremely scared (fear is intense in this, I claim this myself) thinking they have all these diseases because of the amount of sxs and the intensity of them, so what Im saying is that wd CAN mimic disease and to not be frightened because until proven otherwise you could be ok and it is just wd.........are you saying that's not true at all? I have seen over and over again people really getting relief with the type of antihistamines they can prescribe for this, however for me my body let me know real quick this was not an option at this time, I tried the supplements as well......nope! I never said the sxs i posted of MCAS are ALL the sxs i just listed the common ones, which alot of people will have and will relate to when they read my posts and maybe it will put them at ease. there will be different degrees of sickness and sxs. Im simply saying that timing is everything and don't stress your body out completely if your not ready. Why make yourself feel absolutely horrible now if your not able to handle anything that could help you just yet. I did not mean to wait it out forever or even years for that matter. I have also seen some people doing DNRS, which I think is a strong possibility for me to try down the road, again right now I cant even focus on meditation or reading a book, way too much cog fog, It has to wait. Timing is very important for alot of people in benzo wd. Ive seen some people try things one month with no success and then try them a year or 2 years later with great success, this makes me hopeful if I will need something down the road.

 

Ajusta........... i was only trying to help and giving you my thoughts on the subject I hope I haven't offended you in any way that would never be my intensions, i truly do care. I know how sensitive that I am right now and any stress makes it way worse. I can relate to how frustrating this all is, i wish I could go right now and get a bunch of tests run. I know that healing the gut is extremely important for this journey and I'm sure if I could get that alone taken care of it would help tremendously with these sensitivities. Ive tried this already and my body let me know real quick the timing wasn't right and it wasn't tolerating it. You having issues with your bones and such does sound a bit more complicated so yes when your able get in and get it figured out. I truly hope it all gets better and the suffering eventually ends. i want nothing more than to see you better and through this journey to the other side. I do believe you will overcome this one day,.....

 

and.....I do agree with you in your original post on this post that many wd sxs are histamine and mast cell reactions, i think you nailed it there, and the very reason for my replying.  I also wanted to let you know about a year ago I got in touch with a women(Alison Vickery) she is a Functional Diagnostic Nutrition practitioner, who specializes in food intolerances, and mast cell activation. She writes a blog and written several books on the subjects, i wanted her to help coach me through my issues with histamine, such as with diet and getting more knowledge. We emailed back and forth and she asked me if I was currently on or recently off the benzodiazepine. I answered that i was (I was still tapering then)  on the benzo and she said that the medication was the reason for my issue and that she wouldn't work with me until i was completely off and some time had passed. I still plan on doing this possibly. She also stated to me that this can resolve itself and that it takes time, and can linger for quite some time after for some people. I do think this issue for some people was lurking before the benzo mess and they where showing signs of it beforehand and the benzo mess really exacerbated it. No one deserves this, I'm thinking of you, keep us posted! I am suffering myself daily so maybe I didn't relay my message earlier the way I intended, maybe this will clarify everything........

 

 

 

 

_{edit: title changed to conform to forum policy}

[[Tr...]]

Marigold. I'm too sick to discuss, but I have a few comments. For my part, it’s enough as it is. I put my head in the sand, and I don’t want to think about even more (unusual) diseases. If you feel better, telephone consultation, doctor visits and sampling are possible. But for us, who are too sick to be outdoors, this is unthinkable. And I don’t want to burden the healthcare in these times. "Even when you go home with no results, - then you can calm down and telling you it is just withdrawal." I can’t do that! Doctors and nurses are on their knees during the pandemic. I was a nurse, so I sympathize with everyone who is struggling. Searching for other diseases and diagnoses makes me sad and overwhelmed.

 

And "Benzodiazepines are known to stabilise Mast Cells and given to who already have mast cell problems. Severe mast cell activation can cause quite serious problems. The symptom list has considerable overlap with many of the physical symptoms people get in withdrawal. Basically I personally think mast cell activation is a much better explanation of many withdrawal symptoms than GABA receptors etc which apparently upregulate very quickly if you look at the neurobiology of these things. Severe mast cell activation can cause quite serious problems". The same thing, this just makes me stressed. 

 

Shortness of breath; asthma or tuberculosis? Internal vibrations; MS or Parkinson’s? Palpitation; heart disease? Why think and focus on the worst? I think it's unnecessary. And many have problems with health anxiety. Why cause even more stress? This is what I wanted to say, and I'm extremely tired and exhausted. Thanks. 

[[Aj...]]

MCAS is common in ME/CFS and Ehlers Danlos both of which I have.

It had not occurred to me until I came off that the benzos had helped my chemical sensitivities.

 

I do not think waiting around while it further destroys my connective tissue and skeleton is an option.

The tests I need will be done at home.

 

As far as not bothering the health system, given the fact they have been destroying my life since 1986 they can, quite frankly, go *#%^ themselves.

 

 

 

[[Ma...]]

I have waited for you translator to arrive in this topic.It is a topic Ajusta started and you have fought several times against her naming mast cells on this forum. I thought you would be able to not do it, but okey, more fuel into the fire.

 

If you dont want to go and see a doctor it is totally fine for me. Do what's best for you.

But dont tell people not to talk about illnesses which can occur due to withdrawal or the usage of benzos. Thats all I would like.

 

And the pandemic - you do not need to do all the tests I mentioned today or in the middle of a pandemic, I think thats logical. And its also logical that you dont run these tests in the first months of withdrawal and that you dont go to the doctor when you cannot walk.

 

To run further tests is a door. You do not need to open it! For some the fear of what is behind is too big, then just let it closed, like you do. Thats fine for me. But for those who are looking for options and need them because of many reasons, we should be allowed to mention that there is this door. Instead of telling them, no just stay where you are, it will be fine.

 

And thats it.

 

And please dont start another fight with Ajusta again. It makes me so sad any time it happens.

[[Aj...]]

Thanks Marigold.

 

I think it is important ppl have information about what might be driving sensitivities etc. WD is not an explanation for why these things happen. It dies not describe the biological reason for symptoms.

 

It is up to others whether they want to ignore it or get it checked.

 

 

[[Pa...]]

This has been an interesting and mostly respectful discussion, many differing viewpoints have been shared and the team appreciates the courtesy with which everyone is communicating.  We see no reason to intervene at this time since the Chewing the Fat board is the perfect place for these types of discussions. 

 

[Guest [Su...]]

Marigold.....maybe you could share your journey and how its panned out for you in regards to MCAS?

How sensitive were you after you came off, were you slightly or severely sensitive, what did that look like?

Were you histamine intolerant as well?

At what point in time in your journey did you get a diagnosis?

What did your Dr. Recommend for your particular treatment?

When were you able to handle the treatment?

How are you now, have these issues resolved?

Are you functional and living life, is this diagnosis no longer hindering you from living?

 

I think these answered would be more helpful so everyone could see that the other side of the door is attainable and at what point you were able to attain it?

 

I think a team effort is a much better strategy when trying to accomplish a goal.......

[[Ca...]]

Well, following the astute advice “get tested” I found the door locked.. First I will have to see the Key Master (a specialist)...

 

Or.. When seeing this temp Dr im using for this flu stuff, I asked “Whats involved with testing for Mast Cell issues..??”

I got “the look”, and she said “you arnt covered in an itchy rash” -implying no Mast Issues, end of discussion..

 

Thing is, here at least, one cant just see a specialist without first a GP Drs referral.. That leaves trying to track down a naturopath or similar to try and do it privately.. Not viable for me at this point, just getting a chest x-ray yesterday near killed me..

 

So anyways, Im still thinking that for ME, any Mast or Histamine issues are secondary, subsequent from my GI issues and things like SIBO and Leaky Gut.. But thats just following breadcrumbs atm..

I dont think I have the problems others here are reporting, and any Mast or Hist. type things (esp sensitivities, eating reactions, etc) are improving as my GI slowly comes back online..

 

Wishing you all the best..

 

[[Aj...]]

Glad to hear things are improving for you.

 

I have instant reactions to eating which is why endo thinks is mast cell esp as have pre-existing EDS and ME/CFS.

 

He did say rash is not necessay as I have no rash.

 

He asked a lot of questions that included things like tinnitus and Neuro symptoms.

 

I had to pay for private phone consult & am having probs finding way to get the tests.

 

[Guest [Su...]]

Cantfly......your exactly what I'm referring too in my posts, that many(and most I've observed) will in benzo wd have sensitivities in this journey but they don't in fact have MCAS and it improves and eventually vanishes. Sounds like for you its just some sensitivities and yes i do think the gut has a huge role in all of this, whether its mcas or not. i plan to address that for sure when I'm able to.

 

Ajusta..........You seem to possibly have MCAS and it sounds like you had it before benzos but wasn't aware, in that case testing is imperative. However you haven't addressed any of my questions or concerns, so I'm wondering are you able to tolerate any of the treatments that they offer for this at this time in your journey? I never know when the proper time to address this is because so far I've been unsuccessful at anything I've tried to help myself with. This is my big point, it feels like a hamster wheel, it would be great to do something to calm down these reactive mast cells however we cant because we are too sensitive at this time...............so............timing must be everything, right? how far do you take it? When have you been patient enough? Big million dollar question here and why Ive said all that i have said.

 

Marigold.......your answers here could shed some light on what someone's journey with this in wd would look like.  That would be helpful. Were sensitivities ever that bad for you that timing didn't really matter?  I posted above some questions.

 

Translator........ I know that honestly fear is driving your feelings about all this, I relate to this, the fear sxs hit me immensely once i came off, its relentless and makes you feel scared X's 100, especially health related fear (that's the worst). It has gotten better again so I'm able to distinguish real fear and the over the top fear that takes over.  im so sorry, i know this conversation makes you feel frustrated. In time you can decide if you are experiencing these sxs to eventually address them but if right now its just too overwhelming then that's ok. Be easy on yourself and just let it go for now. Once your in a better place and if your still experiencing extreme sensitivities then you can then address them. I do believe this fear sxs is what makes all this even harder........I get it now, before when I didn't have it i use to be like what is this fear or health fear that everyone is talking about, then i got it and was like OOOOOOOOH ok WOW, I get it now!.........ugggggg......go away!!!!!! it was awful, the minute i got scared of my health(I had it with everything but health stuff was the worst) my anxiety would go through the roof and all my sxs would escalate. It does get better, dont worry. hang in there......

[[Aj...]]

I can’t take antihistamines.

I have no idea if I can tolerate cromolyn or Bologna’s because I haven’t tried them yet.

 

[[Ca...]]

Glad to hear things are improving for you.

 

I have instant reactions to eating which is why endo thinks is mast cell esp as have pre-existing EDS and ME/CFS.

 

He did say rash is not necessay as I have no rash.

 

He asked a lot of questions that included things like tinnitus and Neuro symptoms.

 

I had to pay for private phone consult & am having probs finding way to get the tests.

Iv followed your posts for a loooong time now because I relate well to much of it, just to a much lesser degree for the most part.. -and not all at once..  The reaction to a meal was pretty close though, as best I could tell.. Gosh that would drop me in bed hard in a shaky sweating mess..

The base reasons probably differ though, so I wont bore you with all my little tricks I developed to help a bit, -one being taper speed.. 

More to say, your posts have been a help in several ways, so I thank you for that.. -A small condolence, I know..

 

***

Hi Sunflower,

I get your point, though im probs not the best example for “benzo sensitivities” -I have quite the GI damage history predating benzos.. OIBS-Upper (next to NO functional peristalsis).. Benzos just did the same thing in a “two steps backwards” kinda way.. -Not to say my journey isnt very benzo like, which creates a multitude of questions, in my mind..

-Just to clarify.. -Ill step back now so as to not sidetrack the thread..

 

 

 

 

[[Aj...]]

Glad to have helped Cab!t.

Nice to know the babbling on here helps someone.

 

Do you get instant muscle weakness I.e complete loss of muscle tone that causes all joints to collapse when you eat?

[Guest [Su...]]

Glad to hear things are improving for you.

 

I have instant reactions to eating which is why endo thinks is mast cell esp as have pre-existing EDS and ME/CFS.

 

He did say rash is not necessay as I have no rash.

 

He asked a lot of questions that included things like tinnitus and Neuro symptoms.

 

I had to pay for private phone consult & am having probs finding way to get the tests.

Iv followed your posts for a loooong time now because I relate well to much of it, just to a much lesser degree for the most part.. -and not all at once..  The reaction to a meal was pretty close though, as best I could tell.. Gosh that would drop me in bed hard in a shaky sweating mess..

The base reasons probably differ though, so I wont bore you with all my little tricks I developed to help a bit, -one being taper speed.. 

More to say, your posts have been a help in several ways, so I thank you for that.. -A small condolence, I know..

 

***

Hi Sunflower,

I get your point, though im probs not the best example for “benzo sensitivities” -I have quite the GI damage history predating benzos.. OIBS-Upper (next to NO functional peristalsis).. Benzos just did the same thing in a “two steps backwards” kinda way.. -Not to say my journey isnt very benzo like, which creates a multitude of questions, in my mind..

-Just to clarify.. -Ill step back now so as to not sidetrack the thread..

 

 

 

Ahh Canflt, I see.......yes i dont have any IBS or stomach problems at all, but when Ive researched into the "leaky gut" stuff, I relate so much to that. i used alot of antibiotics in my past, well my young past, I had chronic strep throat which I had to take antibiotics many times till they removed my tonsils. So I know because of that alone I need to repair my gut and now with these meds.

[Guest [Su...]]

Thanks Marigold.

 

I think it is important ppl have information about what might be driving sensitivities etc. WD is not an explanation for why these things happen. It dies not describe the biological reason for symptoms.

 

It is up to others whether they want to ignore it or get it checked.

 

Ive noticed sometimes that this community can be an all or nothing voice when it comes to wd, you said:

 

"I think it is important ppl have information about what might be driving sensitivities etc. WD is not an explanation for why these things happen. It dies not describe the biological reason for symptoms."

 

Im a little confused at this post, you use the word might, but then you said wd is NOT an explanation. So are you saying for some MCAS is the reason for sxs, or for all? as if to say that sensitivities which occurred during wd can only be a result of mcas or mcad etc, and that is simply not true for everyone. My sensitivities can be extreme at times but they dont look like your reactions. So we have to be careful in our words because other people will be interested in this topic and when trying to get all the information they will begin to 100% assume that they do in fact have this condition.  When you read the classic or common sxs of MCAS that is where you see that wd overlaps this, making this very inconclusive. I have spoke to people that have been through wd and had severe sensitivities to food and chemicals and when their wd was over the sensitivities went away and they can tolerate foods and chemicals now and they are no longer sensitive, for some they said it took time after their other sxs left though. I will also however in the same breath say that MCAS can incur in some people so to not rule it out if they are struggling and to get tested and to see if treatment will help.

 

[[Aj...]]

The term ‘withdrawal’ is meaningless as an explanation for long term symptoms.

It does not in any way describe the processes that are driving the symptoms.

It is not a biomedical explanation for symptoms.

 

You could say receptor dysregulation caused by the withdrawal of the drug causes symptoms. But why different symptoms in different ppl?

 

So, there is much more going on in those that experience a lot of physical symptoms that last fir a long time.

 

As I said, it is up to ppl whether they bother to get tested etc.

 

If you just want to ignore it all like many ppl do then just do that.

 

Nobody is forcing you to get tested for anything.

 

 

[[Ca...]]

Glad to have helped Cab!t.

Nice to know the babbling on here helps someone.

 

Do you get instant muscle weakness I.e complete loss of muscle tone that causes all joints to collapse when you eat?

Thats more what is developing over the last year or so, muscle wise, and only one ankle joint (pre damaged).. -so more the muscle neuropathy and weakness.. Still much less than what you describe^^...

As mentioned (somewhere), the eating reaction is improving as my GI functions better.. That was more fever, fatigue, flushing, cramps, kicked by a horse.. Perhaps a bit like if one ate a heap of rotten seafood.. -Pretty instant.. Abdo cramps would leave big bruises, like id been attacked with heparin needles (blood thinners)..

-Never been good at describing these things.. -Smashed Crab, Jellyfish in the sun, Angry Crocodile in my guts.. or the more universal “Zombie” for TWD fans..

Thought I was going to miss the neck and TMJ stuff, but thats just starting to appear..

 

Did your/anyones jaw stuff start slowly with positional triggers, or just hit quick n hard..?? -fwiw..

 

Also yes, we need to get away from WD terminology once beyond a “standard” Ashton experience.. (imo)..  -I guess I tend to use the word “damage”..

 

[Guest [Su...]]

Glad to have helped Cab!t.

Nice to know the babbling on here helps someone.

 

Do you get instant muscle weakness I.e complete loss of muscle tone that causes all joints to collapse when you eat?

Thats more what is developing over the last year or so, muscle wise, and only one ankle joint (pre damaged).. -so more the muscle neuropathy and weakness.. Still much less than what you describe^^...

As mentioned (somewhere), the eating reaction is improving as my GI functions better.. That was more fever, fatigue, flushing, cramps, kicked by a horse.. Perhaps a bit like if one ate a heap of rotten seafood.. -Pretty instant.. Abdo cramps would leave big bruises, like id been attacked with heparin needles (blood thinners)..

-Never been good at describing these things.. -Smashed Crab, Jellyfish in the sun, Angry Crocodile in my guts.. or the more universal “Zombie” for TWD fans..

Thought I was going to miss the neck and TMJ stuff, but thats just starting to appear..

 

Did your/anyones jaw stuff start slowly with positional triggers, or just hit quick n hard..?? -fwiw..

 

Also yes, we need to get away from WD terminology once beyond a “standard” Ashton experience.. (imo)..  -I guess I tend to use the word “damage”..

 

Canfly.......you seem very open minded and up for a nice discussion, i appreciate that.  I'm absolutely not a put my head in the sand type person but I am trying to figure out when do you just ride it out and when do you pull the trigger and go for the testing of things and the treatment that entails. Its very easy for someone who is not in the throws of wd to tell you to stop being a chicken and go to the dr and try treatments. Ive been unsuccessful at just trying small things that help sensitivities such as Vit C and some safe supplements that can help heal the gut, so going for bigger guns is truly scary at this point (my reactions were not pretty). I have had people tell me, "are you crazy? your not even off the drug that long and its extremely normal for your body to be this sensitive, it will settle down in time, your whole nervous system is on fire and the CNS controls everything." This coming from people that were in wd that had very bad sensitivities. Also I dont have what Adjusta describes or even you with the muscle, cramping, etc. When I expose myself to triggers it ramps up the wd sxs I had before the sensitivities ramped up. So this is why Im reading these type posts to gauge what I'm dealing with.  I see though in your signature that you tapered Lyrica, I will say that I have a sister who is tapering Lyrica at the moment, I believe she is currently at 100mg(she has taken it for several years for diabetic neuropathy). Her GI Issues are horrible, she has IBS and diarhea everyday, she complains of horrible cramping all the time. She also has been taking nexium because of that drug, she was on Gabapentin before Lyrica, so just a thought, when you were describing your sxs I thought of her immediately. So my million dollar question is when to give up waiting, bit the bullet, and just suffer through the Dr ordeal and treatment. I know I'm waiting it out for now and until then I'm just here trying to see what others are doing and to learn.

[[Aj...]]

I don’t have GI stuff as a response to eating and gave the same reactions if tiny bit of olive oil etc touches my lips or from washing hands with non fragrances soap etc. So not sure same thing as you Can’t.

 

Ky jaw stuff suddenly got very bad.

Now it is different than most ppls I think. It feels sort of under pressure but the ligaments have collapsed so is not tight anymore. The joints have collapsed and are out of position.

My skull has collapsed due ninth my neck. All the discs and ligaments have been destroyed in the last year. It shows on MRIs.

 

 

Recent research has shown IBS may be MCAS. Google it.

 

 

 

[[Ca...]]

Glad to have helped Cab!t.

Nice to know the babbling on here helps someone.

 

Do you get instant muscle weakness I.e complete loss of muscle tone that causes all joints to collapse when you eat?

Thats more what is developing over the last year or so, muscle wise, and only one ankle joint (pre damaged).. -so more the muscle neuropathy and weakness.. Still much less than what you describe^^...

As mentioned (somewhere), the eating reaction is improving as my GI functions better.. That was more fever, fatigue, flushing, cramps, kicked by a horse.. Perhaps a bit like if one ate a heap of rotten seafood.. -Pretty instant.. Abdo cramps would leave big bruises, like id been attacked with heparin needles (blood thinners)..

-Never been good at describing these things.. -Smashed Crab, Jellyfish in the sun, Angry Crocodile in my guts.. or the more universal “Zombie” for TWD fans..

Thought I was going to miss the neck and TMJ stuff, but thats just starting to appear..

 

Did your/anyones jaw stuff start slowly with positional triggers, or just hit quick n hard..?? -fwiw..

 

Also yes, we need to get away from WD terminology once beyond a “standard” Ashton experience.. (imo)..  -I guess I tend to use the word “damage”..

 

Canfly.......you seem very open minded and up for a nice discussion, i appreciate that.  I'm absolutely not a put my head in the sand type person but I am trying to figure out when do you just ride it out and when do you pull the trigger and go for the testing of things and the treatment that entails. Its very easy for someone who is not in the throws of wd to tell you to stop being a chicken and go to the dr and try treatments. Ive been unsuccessful at just trying small things that help sensitivities such as Vit C and some safe supplements that can help heal the gut, so going for bigger guns is truly scary at this point (my reactions were not pretty). I have had people tell me, "are you crazy? your not even off the drug that long and its extremely normal for your body to be this sensitive, it will settle down in time, your whole nervous system is on fire and the CNS controls everything." This coming from people that were in wd that had very bad sensitivities. Also I dont have what Adjusta describes or even you with the muscle, cramping, etc. When I expose myself to triggers it ramps up the wd sxs I had before the sensitivities ramped up. So this is why Im reading these type posts to gauge what I'm dealing with.  I see though in your signature that you tapered Lyrica, I will say that I have a sister who is tapering Lyrica at the moment, I believe she is currently at 100mg(she has taken it for several years for diabetic neuropathy). Her GI Issues are horrible, she has IBS and diarhea everyday, she complains of horrible cramping all the time. She also has been taking nexium because of that drug, she was on Gabapentin before Lyrica, so just a thought, when you were describing your sxs I thought of her immediately. So my million dollar question is when to give up waiting, bit the bullet, and just suffer through the Dr ordeal and treatment. I know I'm waiting it out for now and until then I'm just here trying to see what others are doing and to learn.

Oh boy, first up in the morning technical posts.. -That can be a bit hit n miss..!!

The answer that springs to mind is its probs a gut feeling as to when to put our trust in the medical profession.. I obviously cant and wont say to avoid help from the medical profession, but perhaps we need to educate ourselves hand in hand with it, and as per our individual situations.. Ofcourse, we can take test results and do what we will with them too..

 

Then I think im perhaps not the right one to ask, I came about this a bit backwards I guess.. I had masses of Drs from many specialities, all trying to get me better, and none truly understanding physical dependance and discontinuation problems..

Ill give the Gastro story quick, cos that was the final straw..

Bear in mind I had half a pelvis tear through my guts, and Iv had it all out on a table beside me (so to speak) a few times..

I had it all back to working sorta pretty well when we were keeping up with increasing dependance (Opiates), but as soon as I left hospital and started to reduce it became a nonfunctional mess..

Hospital kept stabilising me and passing me back to external Gastros, who quickly passed me up the ladder.. Now they all casually mentioned “I needed to reduce the opiates” -in that few a words, but on the first appointment with our city's top Prof. (head of our dedicated hosp gastro dept), and who had overseen my initial stabilising and repair surgery, (well before pelvic fixation and washout debacle(s)), -he told me to try some magnesium, and gave me a bottle of natural stuff (ibergast), and a printout on FODMAP.. He also had reports of my recent Transit time studies (effectively 36 days)...

2nd app, 4weeks later, he was planning the removal of my pretty functional large bowel..!!????

 

I RAN, dusted off my internet, found a ncbi paper on Opiate Induced Bowel Syndrome -Upper, and the use of Prucalopride to treat, and never looked back.. I also found a site called BB that had this dedicated board to a thing called Protracted benzo WD, and the penny dropped, so I joined..

 

I have a GP that later took over prescribing (long story short), -She had seen my struggles, accepted and supports me within the limitations of what she can do without referring me to specialists, but its all beyond her (and she did try hard)...

 

So I guess to answer your question, I dont see the point in seeing specialists that dont understand serious dependance and discontinuation problems..

 

**It was similar for our top Medication and Addiction Specialist (sorta), but thats another story..

-Though his pet speciality was benzos, and we had a great chat on that.. Still, despite saying I, like many of us, was a 1 in 10 000 statistic (in his opinion), his solution was reinstatement on buprenorphine... -With view to a possible slow taper if tolerated.. His reasons made sense, -nearly..

 

Sorry, bit of a wander there, -What did I miss..?? (Dare you ask incase you get another long sad story.. lol) -Think im awake now..

 

[[Ca...]]

I don’t have GI stuff as a response to eating and gave the same reactions if tiny bit of olive oil etc touches my lips or from washing hands with non fragrances soap etc. So not sure same thing as you Can’t.

 

Ky jaw stuff suddenly got very bad.

Now it is different than most ppls I think. It feels sort of under pressure but the ligaments have collapsed so is not tight anymore. The joints have collapsed and are out of position.

My skull has collapsed due ninth my neck. All the discs and ligaments have been destroyed in the last year. It shows on MRIs.

 

 

Recent research has shown IBS may be MCAS. Google it.

Sorry, yes “same” would be a real stretch.. More connections and possible similarities at times, depending on topic, and most certainly to a much lesser degree.. Maybe I got some mixed up with others, Im thinking back over the yrs..

Was it you that had to be constantly eating, or had little control over what went into your mouth..??

-just a memory jogger for me, not that I had the same..

Iv never gotten TOO caught up in similarities to others at the best of times, kinda a strength around here I recon..!! Not to say I dont see possible connections..

 

 

[Guest [Su...]]

Glad to have helped Cab!t.

Nice to know the babbling on here helps someone.

 

Do you get instant muscle weakness I.e complete loss of muscle tone that causes all joints to collapse when you eat?

Thats more what is developing over the last year or so, muscle wise, and only one ankle joint (pre damaged).. -so more the muscle neuropathy and weakness.. Still much less than what you describe^^...

As mentioned (somewhere), the eating reaction is improving as my GI functions better.. That was more fever, fatigue, flushing, cramps, kicked by a horse.. Perhaps a bit like if one ate a heap of rotten seafood.. -Pretty instant.. Abdo cramps would leave big bruises, like id been attacked with heparin needles (blood thinners)..

-Never been good at describing these things.. -Smashed Crab, Jellyfish in the sun, Angry Crocodile in my guts.. or the more universal “Zombie” for TWD fans..

Thought I was going to miss the neck and TMJ stuff, but thats just starting to appear..

 

Did your/anyones jaw stuff start slowly with positional triggers, or just hit quick n hard..?? -fwiw..

 

Also yes, we need to get away from WD terminology once beyond a “standard” Ashton experience.. (imo)..  -I guess I tend to use the word “damage”..

 

Canfly.......you seem very open minded and up for a nice discussion, i appreciate that.  I'm absolutely not a put my head in the sand type person but I am trying to figure out when do you just ride it out and when do you pull the trigger and go for the testing of things and the treatment that entails. Its very easy for someone who is not in the throws of wd to tell you to stop being a chicken and go to the dr and try treatments. Ive been unsuccessful at just trying small things that help sensitivities such as Vit C and some safe supplements that can help heal the gut, so going for bigger guns is truly scary at this point (my reactions were not pretty). I have had people tell me, "are you crazy? your not even off the drug that long and its extremely normal for your body to be this sensitive, it will settle down in time, your whole nervous system is on fire and the CNS controls everything." This coming from people that were in wd that had very bad sensitivities. Also I dont have what Adjusta describes or even you with the muscle, cramping, etc. When I expose myself to triggers it ramps up the wd sxs I had before the sensitivities ramped up. So this is why Im reading these type posts to gauge what I'm dealing with.  I see though in your signature that you tapered Lyrica, I will say that I have a sister who is tapering Lyrica at the moment, I believe she is currently at 100mg(she has taken it for several years for diabetic neuropathy). Her GI Issues are horrible, she has IBS and diarhea everyday, she complains of horrible cramping all the time. She also has been taking nexium because of that drug, she was on Gabapentin before Lyrica, so just a thought, when you were describing your sxs I thought of her immediately. So my million dollar question is when to give up waiting, bit the bullet, and just suffer through the Dr ordeal and treatment. I know I'm waiting it out for now and until then I'm just here trying to see what others are doing and to learn.

Oh boy, first up in the morning technical posts.. -That can be a bit hit n miss..!!

The answer that springs to mind is its probs a gut feeling as to when to put our trust in the medical profession.. I obviously cant and wont say to avoid help from the medical profession, but perhaps we need to educate ourselves hand in hand with it, and as per our individual situations.. Ofcourse, we can take test results and do what we will with them too..

 

Then I think im perhaps not the right one to ask, I came about this a bit backwards I guess.. I had masses of Drs from many specialities, all trying to get me better, and none truly understanding physical dependance and discontinuation problems..

Ill give the Gastro story quick, cos that was the final straw..

Bear in mind I had half a pelvis tear through my guts, and Iv had it all out on a table beside me (so to speak) a few times..

I had it all back to working sorta pretty well when we were keeping up with increasing dependance (Opiates), but as soon as I left hospital and started to reduce it became a nonfunctional mess..

Hospital kept stabilising me and passing me back to external Gastros, who quickly passed me up the ladder.. Now they all casually mentioned “I needed to reduce the opiates” -in that few a words, but on the first appointment with our city's top Prof. (head of our dedicated hosp gastro dept), and who had overseen my initial stabilising and repair surgery, (well before pelvic fixation and washout debacle(s)), -he told me to try some magnesium, and gave me a bottle of natural stuff (ibergast), and a printout on FODMAP.. He also had reports of my recent Transit time studies (effectively 36 days)...

2nd app, 4weeks later, he was planning the removal of my pretty functional large bowel..!!????

 

I RAN, dusted off my internet, found a ncbi paper on Opiate Induced Bowel Syndrome -Upper, and the use of Prucalopride to treat, and never looked back.. I also found a site called BB that had this dedicated board to a thing called Protracted benzo WD, and the penny dropped, so I joined..

 

I have a GP that later took over prescribing (long story short), -She had seen my struggles, accepted and supports me within the limitations of what she can do without referring me to specialists, but its all beyond her (and she did try hard)...

 

So I guess to answer your question, I dont see the point in seeing specialists that dont understand serious dependance and discontinuation problems..

 

**It was similar for our top Medication and Addiction Specialist (sorta), but thats another story..

-Though his pet speciality was benzos, and we had a great chat on that.. Still, despite saying I, like many of us, was a 1 in 10 000 statistic (in his opinion), his solution was reinstatement on buprenorphine... -With view to a possible slow taper if tolerated.. His reasons made sense, -nearly..

 

Sorry, bit of a wander there, -What did I miss..?? (Dare you ask incase you get another long sad story.. lol) -Think im awake now..

 

 

Yeah...i guess it is going to be gut instinct.....

[[Ca...]]

Ajusta...

-Just checkin how you are doing..??

[[Aj...]]

Thanks!

 

Same. No changes at all.