12-24 months and up support group

[[...]]

Is it normal to develop wide spread neuropathy, 12-16 months off the meds? I also had nervepain before, but it just got a lot worse lately.

Hugs, Jørgen

[[Li...]]

JBen,

Here's hoping your dentist appointment went well. Wishing you all the best! Hugs!

 

GG,

I hope your appointment goes well tomorrow with the surgeon.

 

JB, I'm I'm so sorry you're having nerve pain but I think that that is quite normal, unfortunately.  Hope you start feeling better soon. Hugs!

 

LiveLife

[[...]]

Ok well.  The dentist visit went well in that I didnt get any drugs injected into my poor body.  I do need some heavy dental work that will require carbociane next Thursday.  So I am going to enjoy this next week as if it were my last lol.  My dentist is great!  Totally understands.  Listened to my long withdrawal story.  Completely empathized.  I really like him a lot.

[[Ga...]]

Yea for an understanding dentist!  So happy you had a positive experience, JBen!!!!

 

Hugs,

 

GG

[[Be...]]

JBen, that's good that your dental appt. went well.

[[Li...]]

JBen,

So glad to hear your dental appointment went well. Hopefully that will be the case coming up next week too. Hugs!

 

LiveLife

[[jo...]]

Hi everyone,

I tear up reading these posts and the incredible care and love expressed here. It means so much to receive and read the replies of comfort and care. Thank you to those who have encouraged me here.

 

Ive had a some rough days with the terrible burning nerve pain on scalp, shoulders and lower legs the past 3 weeks. There’s not a day that I don’t have it, it seems like it just gets worse. I suppose I’ve been in a long wave. I thought month 8 would be better, then month 9, then 10, and now in month 11.

I’m realizing that I can’t have the expectations because it just lets me down and breaks my spirit. Man, I’ve prayed so many months for my miracle. It has not yet come, but I’m grateful for the mercies each day to get through this tumultuous storm.

 

I had to have a bridge replaced on the upper teeth on Monday at the dentist due to clenching so hard when I’m in pain from the burning. I cracked the bridge. I had several Novocain shots and even one in the roof of my mouth! Wow; so incredibly painful,but they had to remove the old bridge and prep the gums for the temporary.

 

Then, on Tuesday, I had my stitches removed from my tooth extraction that I had 3 weeks ago; so it is now very sensitive and painful.  The extraction was due to fracturing my root due to the clenching too.

So now I have my night guard they made me which should help. All this dental work due to clenching my teeth at night when I’m in pain has cost me so much physically and financially.  Such a price we’ve all paid; sadly.

 

I’m in quite a wave right now due to the gum pain from all the trauma to them this week and the extraction.  I did fine with the Novocain on Monday I guess, maybe it’s the painful gums that seem to be driving the intense wave, along with anxiety and stress of it all, plus stress from my job and stress from the burning.  I’m ready for the good news angels to come sit on my shoulders.

 

LadyDen

Congratulations on 28 months! My goodness, you are an amazing warrior and a beautiful example of strength! You bring great courage and hope to us here, and what a vessel of goodness and hope that you are! I’m so glad you’re feeling better too. Sending you big hugs!

 

JB

I’m so sorry you’re dealing with the nerve pain. It truly is an absolute unimaginable symptom to bear.

I’ve had it for 10 months plus 4 months during my attempted taper before detox. It has gotten a little better when I think back, but many days feel like acute and sometimes feel even worse than ever. It makes no sense. I use nylon ice packs around me at night, so perhaps that might help you too. I pray the pain subsides for both of us too.

 

JBen

I’m so glad your dentist appointment went well. I am sending you good thoughts and wishes for your next appointment. You are so strong and will walk right through and we will be supporting you the whole way.

 

GG

I’m so glad you got to speak with Dr. Jenn. I’ve met with her a few times, most recently last month. Time flies when talking with her; there is never enough. Her reassurance is so helpful.

I’m also glad that the orthopedic doc is looking into helping you with the headaches. You’re gonna get better! We believe it.

 

LiveLife

I hope you’re having a better week and that the fears have subsided and peace has taken its place.

I’m thinking of you and your husband, praying for renewed strength and healing for him as well.

 

Helen

I hope your time at the beach has been a time of refreshment and healing for you.

There is such beauty in the majestic oceans and I hope the source of strength from the waters was felt by you to bring you healing.

 

Becksblue, Decatur, Deanna, Leann,

I hope you are having a good week and that the change of seasons is a reminder of the sense of renewal that will be ours. Sending you healing thoughts as well.

 

Blessings.

 

[[Li...]]

Jordan,

 

Oh my, you sure have been through a lot.  I'm glad you're able to get through your appointments and now you just have to let everything settle down. Hopefully that will be the case and things are going to be much better once you get through this.

 

I'm actually having a really rough couple of days, today was absolutely horrific. I thought yesterday was, but today beat it. Hoping for a better day tomorrow. That goes for you too for all of us really.  Sending you big hugs!

 

LiveLife

[[jo...]]

Jordan,

 

Oh my, you sure have been through a lot.  I'm glad you're able to get through your appointments and now you just have to let everything settle down. Hopefully that will be the case and things are going to be much better once you get through this.

 

I'm actually having a really rough couple of days, today was absolutely horrific. I thought yesterday was, but today beat it. Hoping for a better day tomorrow. That goes for you too for all of us really.  Sending you big hugs!

 

LiveLife

 

Oh LifeLife, I’m so sorry that you’ve had such a difficult time the past few days.

It’s so cruel how one day things can seem more stable and then poof! another wave rears it’s ugly head. It makes no sense at all. It would seem such much easier if we knew the date when this would all end. It would perhaps give us more strength to bear the symptoms and strengthen our minds with hope and resilience.  You have been through so much too LL, and I know that your concerns over your husband’s health must be weighing on you heavily.

You are so kind to encourage me and everyone here. I pray your comfort comes overnight.

I am thinking of you and praying for your peace and healing. May every fear be conquered and only peace be felt.

Sending you so much love. 💕🙏

JordanJ

[[Be...]]

Thanks Jordan, sorry about your dental issues.  Floss a lot and use mouthwash.  That's what I do.

[[La...]]

Morning hugs! Thank you, Live, Jordan, JBen, Leann and GG for your congrats on my 28 months! It put a big smile on my face even though I’m in rough waters. I want to say how much I love each of you. I appreciate the love on this thread. You all are some of the best people I never met personally in my life! Hands down true warriors! You all deserve a medal 🥇 in this! ALL of you do!

I’m so sorry we have to go through this but since we do, I’m glad to go through it with you all. Let’s keep holding each other up to get to the finish line of this tedious journey.

May the window fairy shower her love on us today! Sounds like we all could use a visit from her. I’m putting out some cookies and jasmine tea to entice her to come visit for awhile. 

I’m so very sorry to hear of us having a rough time. Hopefully soon things will settle down for good. I keep telling myself that these are JUST symptoms…they’re not the real me!

 

:smitten:

[[La...]]

LadyDen, HAPPY HAPPY 28th month to you🎉🎉🎉😍😍🍭🍭🍭.  As for the timeframe you are now in compared to mine, here is a little backstory:  I felt almost healed at 25 months in May, but suffered a setback from a UTI and female issues that presented in mid-June and which lasted up until late August, early September.  I was put on numerous antibiotics, suffered a botched uterine biopsy, hospitalized for three days, given a steroid pre-surgery, all followed by a pretty bad fall on September 2nd.  Obviously quite a bit of trauma all at once, which brought on some nasty waves much like what you are experiencing now.  My CNS was not very happy and let me know it with acute symptoms revisiting and some new symptoms hopping on board!

 

I will celebrate 32 months next Tuesday and am seeing some pretty good improvement.  I had a half hour consultation with Dr. Jennifer Leigh this past Tuesday and she said that I am doing fairly well in spite of all the antibiotics, the uterine perforation, and the hospitalization….and being 75!  We mainly discussed my burning pain headaches and the importance of getting my gut back into good health.  She wants me to try a plant based diet, which I will, but will keep fish and chicken on the menu a few days a week.  So, from my 26 month up until the past few weeks, I also had some pretty bad, all over the board, revolving in and out symptoms.  Pretty depressing!  I had some early on acute symptoms come back around, and a few new symptoms surfaced for a short time. 

 

LadyDen, it seems as if you are in the last big wave which many buddies report having gone through the closer they got to the last big recovery window.  This is so difficult as your mind and body is tired from the constant wave and window pattern, but now is the time to dig deep and wait it out.  It does bear repeating, as you did in your post, that you will never ever have to repeat the past months of suffering you have experienced.  Yea for that!

 

JBen, I am with you in spirit as you bravely face the dental chair this afternoon.  I so hope you have noooooo reaction to the lidocaine and can finally see your way back to healing.

 

I have an appointment with a highly recommended orthopedic Dr/surgeon tomorrow morning to see if possibly when I fell in September the jarring motion jostled my somewhat unstable cervical region in my neck as I am having more neck and shoulder pain.  I would be thrilled if he finds a minor disk issue (I have three bulging disks in my neck which were diagnosed several years ago) which can be fixed with physical therapy.  My neurologist thinks I have occipital nerve pain, not migraines, which I have believed for some time!

 

Love and hugs to all😍😍😍😍😍

 

 

GG

Thank you GG. I will take to heart what you said and be assured that this is just part of the process at the end of my healing. It makes it easier knowing others experience this too in my same timeframe. Live is also having this. Im also basically eating chicken and vegetables this whole time. Fish every now and then. Perhaps I need to eat more of a variety of vegetables. Thanks for sharing what she said. I considered reaching out to her too.

I hope all is well with your orthopedic appointment. I’ll be waiting to hear of it.

Warm hugs 🤗

[[La...]]

Ok well.  The dentist visit went well in that I didnt get any drugs injected into my poor body.  I do need some heavy dental work that will require carbociane next Thursday.  So I am going to enjoy this next week as if it were my last lol.  My dentist is great!  Totally understands.  Listened to my long withdrawal story.  Completely empathized.  I really like him a lot.

Hey JBen I’ll be rooting for you that all goes well at the dentist next Thursday. I don’t blame you for chilling out until then. Lol that gave me a chuckle. You have a great attitude about it. How awesome! Sounds like a great dentist you have.

Love and hugs my friend! ❤️🤗

[[La...]]

Jordan you’re a sweetheart! Thank you! I’m so sorry for your suffering. Wish I could hug you for real so here’s a virtual one

 

 

We’re glad to have you here!

[[Ga...]]

Good Friday Morning All.  My wrist is locked so tight to all of you I may need to get a wrist splint to go along with my ankle boot….well, off of that now, but you get my drift.

 

I want to say that I am sad that so many of us are still feeling the pain, but I am with LadyDen in saying I would not have wanted to walk this bwd path with anyone other than you!  I have been bolstered, supported, encouraged and hugged by many of you, and how can one even measure the impact that this gift continues to give?!

 

A quick update as far as my appointment with a really good orthopedic doctor/surgeon.  He took 10 X-rays of my shoulders and neck and reviewed my last MRI of the same areas in 2020.  He noted that I have a good bit of arthritis in my neck, along with several bulging disks, and some spondylitis, all which could be contributing to my bad headaches and burning brain symptoms.  The tests show that my shoulders are fine, but I need to have another MRI to reveal what is going on with the disks and spondylitis.  I will get the MRI on November 1 , then I am to contact one of his partners who is a spine specialist and who can best decide the approach to be taken in the treatment of my neck and headache pain.

 

At this point I am ready to do whatever is necessary to get rid of this lingering head pain!  My headaches have definitely increased since my fall on September 2nd, which the doctor said is very logical.

 

In the meantime, I am back to using heat and doing light neck stretches.  The doctor said I have very limited mobility of my neck, both sideways and up and down.

 

May we all have the best possible weekend that we can🙏😍🙏😍🙏😍🙏

 

Hugs,

 

GG

 

 

[[La...]]

GGthanks for the report. Although it isn’t a totally good report, I think under the circumstances it’s not too bad. I’m sure the upcoming MRI will shed a better light on what’s going on. In the meantime please just rest and keep a beautiful smile on your face. I also want to see you pain free and better.

 

:smitten:

[[Ga...]]

Thanks so much, LadyDen.  I am going to remain positive and hope for the best.  There are many different ways to approach my neck and head issues, and I think the team of doctors in my ortho group are perfectly capable of “fixing” me up!

 

Enjoy your fall weekend with less pain and more joy😍😍🎉😍

 

Hugs,

 

GG

[[Ga...]]

Is anyone else in the 25 to 35 month timeframe still dealing with flu-like symptoms?  Lately it seems that after a couple of good days, I wake up with nausea, headache, chills, and body aches….this is getting old!!!

 

Anyone?

 

Hugs,

 

GG

[[Ga...]]

P.S.  My doctor just called and said my blood work was all good and urine culture showed no sign of an infection…all good news!  These tests were part of my annual physical.  I asked him why at 32 months I am still getting the flu-like symptoms, to which he responded by saying that I am still extra sensitive to many things that a majority of non-benzo people are not sensitive to.  Case in point: When my husband has a pain on his body, his immune system does not go into overdrive, whereas mine does.  Also, he noted that I sometimes react negatively to too much stimuli, and he is well aware that this is a real bummer for me as I like to be very active when in a window.  He encouraged me to continue to distract and to calm my body down through meditation and some form of body movement.  He thought the consultation with Dr Jennifer Leigh was very beneficial and I should consider more one on ones with her.

 

He is always so supportive and gives me hope that I will climb out of this bwd hole eventually. 

 

So there you have it!

 

Hugs,

 

GG

[[de...]]

GG:  I hope the ortho docs can get you squared away.  Maybe this will be an end to the headaches that have plagued you!  Wouldn't that be great!!!

 

So glad there was no sign of a UTI from your bloodwork!  Hurrah!!!!

 

Your doctor sounds very wise, and I tend to agree.  Our bodies are still sensitive to a lot of things.  It makes sense that your immune system goes into overdrive.

 

Love that you met with Jennifer Leigh.  I think I told you that she stayed at my summer home in TN several years ago.  She is delightful and very knowledgeable.  Hope y'all can continue to meet.  Did she have any suggestions about working on your "gut"?

 

Hope you have a decent weekend!

 

Lisa

[[Li...]]

Jordan,

Thank you so much for the encouraging words and prayers. So much appreciated!

 

LadyDen,

I agree with you that this is so difficult, putting it mildly, to go through. But, we have a nice group of benzo buddies to go through it with.  They are a lovely group of people that I am so happy to know.

 

GG,

Thank you for the update from the doctor. Sounds like you have to get more information with your MRI. But it's great to hear that the blood work all came back fine. I'm so happy to hear that.  Wishing you all the best.

 

Sending warm love and healing hugs to all my buddies,

 

LiveLife

[[Be...]]

GG, glad your UTI is gone now.  I know how painful and uncomfortable they can be.

[[...]]

Am I the only one with a constant terrible headache?

It is extreme in the morning when I wake up.

Hugs, Jørgen

[[Ga...]]

Hi Jorgen.  Yes, I often wake up with a bad headache in the morning and I am now at 32 months post taper from Valium.  But, as I just posted on the 12/24 month board, my headaches may also be caused by some arthritis in my neck as well as some disk issues in that area, too.  My doctor tells me to lie on a heated pillow when I wake up, lightly stretch my neck from side to side and up and down, and take Tylenol if it is really bad.  In the summer months my headaches had decreased substantially, but I believe that when I fell down some steps on September 2nd, I probably caused the muscles in my shoulders and neck to tighten up.  An MRI in two weeks will give the orthopedic doctor a clearer picture as to how to proceed to give me some much needed relief from the headaches.

 

If you have no other issues with your neck or shoulders, then your headaches will definitely fade away.  Many buddies have reported bad headaches which have gone away for good, so stay strong and wait a little longer…..your pain free days are coming!

 

Hugs,

 

GG

 

 

[[...]]

Hi GG

Thank you for answering🙏

I also previously had headaches occationally. But now it is just constant and in the last months it just increased together with my nerve pain, burning, numb areas, shaking, etc. Tylenol doesn't work anymore, so I stopped taking it. I also tried a heated pillow, but it doesn't do any difference. I do stretching...

I hope you will get better with your neck issues🙏

Hugs, Jørgen