4 years off and plus group

[[Te...]]

Thanks Korbe....I'm going to place an order for the device next week....

 

Hugs

TM

 

[[he...]]

Any one 7 years plus still deal with burning mouth ...do it ever end

[[Te...]]

Helpme .....good question.....I've been dealing with this since four months after stopping clonazepam...have better days and very bad days....the burning mouth specialist said that he sees a lot of his patients see less issues after eight to ten years.....do you have a bitter or metal taste in your mouth ?

 

TM

 

[[he...]]

Thank you TM ...((hugs))

[[Te...]]

Help me...

 

Does your mouth get numb like feelings ever?

 

TM

 

[[he...]]

Hi TM...No i dont get the numbness .....just tightness and nerve severe nerve pain in my mouth and all over my body

[[ss...]]

I know no one has been in this post/group in awhile but how is everyone? I feel lyme,pandas, pans, and bartonella are a real thing with these symptoms. Would love honesty because 27 months off and getting worse and weaker and worn down you have to start thinking other stuff.

[[sk...]]

52 months off here and still have anxiety and tinnitus.  Will we ever heal?

 

[[ss...]]

I don’t think we do and it’s very harsh this site saying we do when it doesn’t get better at all.

[[Me...]]

Bump.

 

Looking for people who have noticed waves getting worse before final healing. At 35 months I’ve had some acute waves come from nowhere

[[...]]

Bump.

 

Looking for people who have noticed waves getting worse before final healing. At 35 months I’ve had some acute waves come from nowhere

 

Bump!

An 'acute wave' hitting me in year number four... with new symptoms of total exhaustion, physical and mental, with extreme body weakness. I push and push and push... because of mental symptoms, I can't rest as much as I should... I feel like I am held in a vice  ... hopefully such waves can't last more than... 6 months??? I've been in the pits for about 4 months now...

...6 months ago was my first partial window, and boy was that good! The mental stuff was sooooo much better... and physically, I was more or less 'normal'. Actually, the true physical stuff only started happening a month after the window, more or less, around 3 years and 3 months maybe... this journey makes no freaking sense 

 

Hey Meganz, check out the 18-30+ Months support group on this same board, it might be more active 

 

Bumping up anyway...!

 

Warm hugs 

Julz

[[Ke...]]

I don't come on here much anymore because its so depressing.  At month 42 and never in my worst nightmare thought I would still be dealing with recovery.  By far my worst symptom is the ridiculous amount of fear that I still have.  I wake up every morning and my insides are shaking.  The good news is I can drive to work, run errands without too many issues.  Outside of that, my life completely sucks.  I'm trying hard not to give up but sometimes I wish my body would just give up.  I've lost hope of ever completely healing at this point.  I don't even have windows anymore, rarely have any waves either.  Just more or less a steady day of anxiety, some severe but most of the time, it's manageable.  I pray everyday to be healed, more or less a miracle I guess.  I used to come on here and read the success stories but now they discourage me because so many people heal within a year or two and I'm approaching the four year mark.  I apologize for the negativity but I needed to express myself, its been a long time since I've posted here.  Hope everyone is doing ok. 

[[...]]

I don't come on here much anymore because its so depressing.  At month 42 and never in my worst nightmare thought I would still be dealing with recovery.  By far my worst symptom is the ridiculous amount of fear that I still have.  I wake up every morning and my insides are shaking.  The good news is I can drive to work, run errands without too many issues.  Outside of that, my life completely sucks.  I'm trying hard not to give up but sometimes I wish my body would just give up.  I've lost hope of ever completely healing at this point.  I don't even have windows anymore, rarely have any waves either.  Just more or less a steady day of anxiety, some severe but most of the time, it's manageable.  I pray everyday to be healed, more or less a miracle I guess.  I used to come on here and read the success stories but now they discourage me because so many people heal within a year or two and I'm approaching the four year mark.  I apologize for the negativity but I needed to express myself, its been a long time since I've posted here.  Hope everyone is doing ok.

 

Hey there, Keith!

 

It sounds like we are finding it pretty tough, especially as it has been such a long fight for us already... I'm 43 months out tomorrow, and yes, it is a long road indeed... without hardly any windows either (I just had a partial one after 3 years, it lasted 3 days). But some of us have it tougher than others, what matters is that we are healing in spite of what we can see... it is happening, because this is what our bodies do, they repair themselves, no matter how long it takes. The Body /Brain and CNS do not leave damage unattended to, they work hard at making things right again.

 

Keep going, Buddy, know that you are not alone and must keep fighting.

We all do. And we will.

We are going to be ok, someday...

 

Warm hugs,

Julz x

[[Ke...]]

Thank you Julz!  I just need to read your reply over and over again to stay positive when I'm feeling down.