Barbarannamated: pain<-->depression...chicken<-->egg

[Barbarannamated]

Quick update: I saw a specialist in autoimmunity last week. We managed to get my medical records together for him. He was most "intrigued" by my MRI.

 

He ran several tests for autoimmune markers/antibodies, did a salivary gland biopsy, and MRAngiogram. The bloodwork and biopsy came back slightly positive for Sjogrens lupus and MRA was unremarkable aside from missing A1 branch /artery of Circle of Willis in brain. He diagnosed CNS Sjogrens lupus and prescribed Plaquenil, an old antimalarial. He does not like to use steroids.

 

We (husband and I) agreed that the diagnosis seemed less than definitive and I am not planning to initiate Plaquenil at this time. We had hoped that he would do more to rule out other possibile causes of neurological symptoms such as Lyme or EBV, but he was very targeted to autoimmune and specifically Sjogrens lupus (his area of research). Of course, I realize much of what is going on is due to withdrawal.

 

He did offer the option of doing a PET scan since my MRI was so unusual last year but probably passing on that also. He did say that the demyelination that I have in brain sometimes remyelinates (heals).

[Aria]

Barb,

 

Have you been seen by a neurologist? I see the word "demyelination" and this is what pops out to me? I was told I probably had Sjogrens during my worst poly drugging but that was incorrect.

[Barbarannamated]

Have you been seen by a neurologist? I see the word "demyelination" and this is what pops out to me? I was told I probably had Sjogrens during my worst poly drugging but that was incorrect.

Not yet, but that's exactly my thinking also. It took me a year to get to this doc when what I really wanted was clarification of the MRI. It seems these specislists may have a turf war going on. I walked away with more questions than answers and extremely depressed

[tezza]

I'm sorry Barb. I understand, somewhat. I hope you get answers that will benefit you in some way. It's good to know that healing happens.

 

{{{HUGS}}}

[Nikki]

Hi Barb....popped in to see how you are doing.  Barb anyone can test for EBV.  The test is called a blood titer.  You should have it done when you are feeling lousy so they can see the antibodies doing their job.  They cannot see the virus.

 

I had it (or should I say have it).  It is permanent.  It rarely bothers me.  I have to be overworked for months, not sleep and tons of stress for the virus to reactivate.

 

I remember reading two books on recovering from EBV holistically - and it is the only way.  It paid off.

 

Take care....

[Aria]

The neurologists where I live do have turf war and it's worse if they are in the same practice. The Nerve Conduction Test showed what I might have (no reflexes seen first). Hope you can see a decent neurolgist soon to rule out other ailments and to possibly see what you do have.

[Barbarannamated]

Any thoughts on what might be the least problematic to try to *reinstate* after 2 years off of Pristiq? I am in BAD condition, extremely depressed with anxiety, far worse than ive ever had before or on drugs. In a desperate moment, took a large handful of ibuprofen last week (thinking/hoping to bleed out).

 

I need to stabilize. I have no psychiatrist and have been so desperate I've thought of checking into hospital.

 

Please help me. I feel certain I'm not going to last much longer. I'm sorry for posting in wrong place.

[Altostrata]

Barb, I moved your post here so the community can respond.

 

You've been through so much. I have no idea what drug might help or hurt, I'm sorry to say. Given the anxiety, maybe a tiny bit of lamotrigine?? Please hang in there.

[Rhiannon]

Barb I can't recommend a drug either but please, if you're harming yourself or feeling close to it, please do get help even if it means going into the hospital and being put on meds.  

 

Is there any way you could get in to see a counselor? I can't help thinking that having some real life human support would help. You're so isolated and so alone, and Internet friends don't make up for that.

 

Even just scheduling a massage--can you do that?

 

And if you want to talk on the phone sometime, let me know via PM. I'm sleeping days and working nights right now but we can figure something out.

[Barbarannamated]

Thanks Alto and Rhi.

 

I started bleeding heavily (for me) after being menopausal for 4 years or so. It feels like a period, but probably will go to Urgent Care to get checked. I suspect that's contributing to my severe mood.

[catw66]

Barbara - I noticed that after a car accident in the year 2000 that put me in a state of intractable chronic pain, that my depression got worse with the addition of opioid medications and that like. I somehow now think that using Tramadol with Cymbalta was really really bad for me and I didn't realize it. My psychiatrist used to always say he was not crazy about the Tramadol and then one day a new pharmacist where I go told me he would talk to my doctor if he were me due to potential seratonin syndrome between the two. Well, my seratonin receptors must be shot because I was taking other things for a while (SAM-E) with all this trying to help myself and I never had a lick of it.

 

But I think the whole pain med and antidepressant thing is what really put me in a deep dark hole of severe depression and lethargy over time. I started taking Adderall for the fatigue _ prescribed readily by the same shrink, which made thigns a LOT worse over time. Now that is gone at least since early last month and I feel a little more motivation, but what a combo!

 

I don't know what I am going to do about the chronic pain but I want off all of these things. I do believe the body is a great healer and some day it will all come together if I keep trying.

[alex]

Barabara, I am so sorry you're feeling so bad.

I have been there as you all know;wanting everything to end.It has gotten better for me.Very slowly though

I am just another victim of psy med. it is hard for me to give any advice about taking any drug again.For what I've learned it can be tricky to say the least.

Why don't you try Valerian tincture for your anxiety?

 

Hang in there, always remember that waves are symptoms that your body is trying to heal.And it will.

 

THis too shall pass.

[Karma]

Barb

 

I know we communicated via PMs today, but I hadn't seen this post.  Did you go to Urgent Care?

 

I think you need to find a physician you can work with and possibly try what Alto suggested.  I'm so concerned for you ... please hang in there.

 

Sending you love and light,

 

Karma

[Altostrata]

A hormonal spurt could definitely set off weird psychological symptoms.

 

How are you doing now, Barb?

[tezza]

Barb, I'm so sorry to hear this! When I was going through that menopause stuff, before hysterectomy, I bled almost ALL the time. That went on for a few years before I gave in and had surgery. Looking back, I was an emotional wreck and it was before ADs.

 

Hope you feel better soon!

 

{{{hugs}}}

[Barbarannamated]

Thanks everyone, sincerely.

 

I'm having the usual cortisol morning, but hanging in. My sleep has been especially bad for over 2 weeks ~ bed at 11:00, wake at 2:00 and up for few hours plus restless legs ~ something I thankfully haven't had to deal with much throughout this. The bleeding seems to be slowing.

 

Hopeful that today will be better. Love you all.

[Meimeiquest]

Hi Barb, Adding my good wishes to the pile. I am trying to get to menoSTOP and I have whacking PMS with my rare cycles. I read in a women's magazine that it takes much more FSH at this stage to induce a cycle, and that causes the exaggerated symptoms. Who knows. But I do hope you'll feel much better in a week.

 

BTW, I am not trying to be the fact checker, but I am thinking maybe I read something about you having an out-of-the-blue period. I only mention that because the work up a woman gets with unexpected bleeding with less than a year without a period and more than a year can be quite different.

[Barbarannamated]

Hi Barb, Adding my good wishes to the pile. I am trying to get to menoSTOP and I have whacking PMS with my rare cycles. I read in a women's magazine that it takes much more FSH at this stage to induce a cycle, and that causes the exaggerated symptoms. Who knows. But I do hope you'll feel much better in a week. BTW, I am not trying to be the fact checker, but I am thinking maybe I read something about you having an out-of-the-blue period. I only mention that because the work up a woman gets with unexpected bleeding with less than a year without a period and more than a year can be quite different.

Meimei,I just saw this message and timing may be fortuitous. I am having a brutal family stress-induced crisis but I feel it may be hormonal also. You are right.... I had gone for a few years without period, assuming I was in menopause although I never got vasomotor symptoms/ flashes. Then a light period in 2010 when quick-tapering and a very heavy period in August 2013. It lasted a few weeks. Had ultrasound and found cyst in fallopian tube that I am supposed to have removed along with a D&C and biopsy. My FSH has been extremely high for years (above post menopausal reference range which is highest range).No doc has been able to explain that high value and never knew that it could cause worsened mood symptoms. I'm on compounded estrogen and wondering if that may be complicating things more than helping (for ovarian failure/estrogen deficiency, not menopausal symptoms). I had been doing slightly better and ok'd a visit from my dad (bad history). He's being ok, but his presence has triggered intense grief about my mother's death in July 2012 as well as fear of him passing, end of family, etc. I can barely write coherently, I'm soooo distraught. I intended to go back to my hometown with my father for holidays. He's leaving today and I'm in no condition to go. I'm scared. The dread and anxiety are very bad.

[Nikki]

Barb in the Language of Letting Go...Melody Beattie has daily readings during the holiday season using families and the holidays as triggers for dread/anxiety.  It is there for many people.  I would imagine seeing him would trigger grief about your mom.  If you lived in the same neighborhood and saw each other regularly that would not happen.

 

Living far away and periodic visits bring up the yukky stuff.  It just happens that way.  As older children I think most of us have that fear about our parents passing away.

 

If you can't go back today then give yourself the permission to say you can't.  There's always tomorrow and maybe a visit would be better without holidays in the backdrop.  Plan for it and make part of planning to do some healing over it before you get there.  It is a New Year and maybe a way to begin again.

 

Hugs and thank you for helping me out with your posts.  I am telling you it is a whirlwind down here....why I refer to this as Paradise is crazy.

[Barbarannamated]

Thanks, Nikki. I'm sure that's true of people seeing their family more often vs living across the country. He also keeps reminding me "I'm not going to be around forever / much longer" as if that hadn't dawned on me. I feared that from the time I was a kid.

 

I'm not handling this well at all and husband is worn out with my constant tears and fears.

[Jemima]

I feel so bad for you, Barb.  Wish I had some words of wisdom to make it all go away. Just try very hard not to blame yourself for feeling so bad and not living up to the expectations of others.  There's so much that's not under our control during withdrawal and other illnesses.

[mattinsmom]

Barb

I wish I had words to comfort but I don't. I hear that things are extreme for you. I hear your sadness and your fear. I hear your pain. If I had a magic wand I would give you anything to help. Since I don't, I send cyber hugs. I will hear your story. My cyber shoulder is always available. Prayers are being said for you and for those around you (maybe we can settle them a little too  ). I also send my gratitude for all of the times you have reached out to me, offered me support, and helped me feel welcomed. Keep breathing, slow deep breaths when you can. This will pass. There is a light at the end of the tunnel and its not a train. 

I wish you peace.

[Barbarannamated]

Thanks Jemima and MM. It's 12:40am and I'm sitting in my car wanting to go somewhere for help or just understanding and a hug. This all began 20 years ago with antidepressants and injury. My life is gone.

Too much going on and then husband said I'm not trying hard enough which started huge fight. I'm just SO TIRED of life. Not suicidal, but really wouldn't mind it all being over very soon.

[Petunia]

Barb,

I really don't know what to say, but I can hear how tired and worn out you are.  What your husband said to you isn't true, I have no idea why he would have said that, its obvious to us here that you have been doing the best you can given your situation.

 

I wish I could give you that hug, and sit with you.  Many of us here understand, maybe not exactly, but I know I have been at that place where I'm tired of life and want it to be over.

 

But we are still alive, this is one moment and it will pass, maybe the next one will feel a bit better, or the next one.  None of us can really know what is around the corner.

 

((hugs))

[Nikki]

Her Barb I tried to send you a PM and a red label came up saying you can't accept anymore.  I am not sure how to join AF....I may need your email or send me a friend request on FB.....will ask Sheila how to do this

 

Hugs

[Meimeiquest]

Oh, Barb, It has been such a long journey.  My husband would be tempted to say the same thing about me.  If I was a normal friend, i would just sit and listen.  Since i'm not, I'll say this.....I think it's a great idea to visit your dad.  Anything to move the healing process along, I know your relationship with him is so complicated.  I would see Dr. Shipko, even though I do have issues with his madinamerica piece.  Or I might skype with www.kellybroganmd.com.  She does a lot of interface with homonal issues.  But I'm not you...I hope you will have great wisdom in what to do.  I just feel the stuckness feeling that you have, and I think any action, even if it turns out to be a wrong action, would be better than feeling what you're feeling.  But I am 100% sure there are no easy fixes. 

[mattinsmom]

How is today for you?

[Barbarannamated]

Oh, Barb, It has been such a long journey. My husband would be tempted to say the same thing about me. If I was a normal friend, i would just sit and listen. Since i'm not, I'll say this.....I think it's a great idea to visit your dad. Anything to move the healing process along, I know your relationship with him is so complicated. I would see Dr. Shipko, even though I do have issues with his madinamerica piece. Or I might skype with www.kellybroganmd.com. She does a lot of interface with homonal issues. But I'm not you...I hope you will have great wisdom in what to do. I just feel the stuckness feeling that you have, and I think any action, even if it turns out to be a wrong action, would be better than feeling what you're feeling. But I am 100% sure there are no easy fixes.

Thanks, Meimei. I have contacted Dr. Shipko a few times but he will not return my messages. I have wondered if he's possibly seen my train wreck of case here on forum and not wanted to get involved. I dont hide my identity or location very well. Didnt you have someone refuse to see you? I also had head of brain center at Clev. Clinic in Vegas refuse to see me after I told him my history. Said my case was too complex.I have been extremely disoriented the past several days. I realize it's probably stress, but I'm considering going to hospital to be checked neurologically due to my past MRI.

[Meimeiquest]

Oh, my heart aches for you.  But you are not at all a train wreck.   I believe it was you who said, "The science goes to neurology, the vodoo to psychiatry"?  Hmm, Christmas in the hospital when you're not sure where to go...just kidding, that would not be funny.

 

Yep, I did get turned down.  Have now learned the value of saying "washout" instead of "tapering" meds!  I don't actually know his reasoning, but I did see a new dr. today.  She is a hoot.  Says the toughest diagnostic differential is bipolar II, GAD, and ADD.  She thinks I have ADD (I was really looking for a new diagnosis), wants to wait for a decision on the rest.  Wants me to check blood sugar several times a day to see if that is impacting my nonexistent energy level.  Hates lithium.  

 

Really, a hug Barb.  Wish I could make it better!

[Nikki]

Barb I honestly think you have more knowledge than the doctors.  I am not joking.  Sometimes disorientation is anxiety/stress.  Is it like a surreal feeling?  That is a common side effect from meds too.

 

Is there anything that you do or have done that helps you feel more centered?  The horses, something.....if so, can you try and stick with it.  Supplements?

 

Could the holidays and your dad's visit be a factor?  I just wish we - you - the doctors could find a modality that will help with the symptoms.

 

Lots of Hugs

[tezza]

HUGS, Barb! I hope things get better soon!

[Barbarannamated]

Urgent Care directed me to ER for neuro workup and new MRI but I haven't gone. Husband doesnt want to go. Dont blame him. Probably just stress. I'll let ya know if I do go.

[mattinsmom]

You are very much on my mind and in my prayers.

[cymbaltawithdrawal5600]

And in my prayers too. Take comfort in the fact you are very important to all of us here and we are all pulling for you!

[Barbarannamated]

Thanks everyone.

 

I drove to the hospital (big university teaching hospital with bad reputation in area) and immediately left. This is hospital where I had traumatic detox experience and I couldn't subject myself to their "care" again (along with knowledge that they DEFINITELY had my medical records).

 

I'm still feeling very disoriented and scared. Went to a second urgent care for the day just to ask for Wellbutrin (didnt mention previous MRI). He gave me Ativan. I won't take it. I know it makes me more depressed.

[cymbaltawithdrawal5600]

Hi Barb,

 

I hope you are feeling a bit better, this is a hard thing to go through for you as you have been suffering for some time. I am glad to see you posting more again even if the news is not always cheery. Every day we can get through, no matter how we do it, is a day we don't have to do again. I have you in my prayers! (I've taken to praying a lot lately   )