NeuroTalk Support Groups - Just having an overwhelming need to vent...

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- - Just having an overwhelming need to vent... (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/205756-overwhelming-vent.html)

Quote:

Originally Posted by St George 2013 (Post 1076381)

I have severe small fiber neuropathy and understand some of what you are going through.

The drugs make me foggy brained and I can't find the exact words I am looking for sometimes. My family tends to finish my sentences for me.

The problem I had with my husband was that last year when I was jumping from dr to dr trying to find out what was wrong with me (dx was due to diabetes and then 6 rounds of chemo) and he actually thought I was 'faking' my pain. We have been married for 34 years and he of all people should have known better. When I finally got a skin biopsy done and he read the results he finally understood what I was going through.

I also get 'well you look fine' which drives me crazy ! They don't see me on the days I'm in bed because I can't walk due to the pain.

Maybe you could print some information out on your condition that explains what you are going through and ask them to read it. Might help and might not...just a suggestion.

I've just been dealing with this a little over year and this has ruined the life I had. I had to file for SSDI after working all my life and I'm only 52. I can't cook, clean, grocery shop or drive. The house is a mess. My daughter buys my groceries for us and cooks for us every night.

I hope things start getting better for you and please keep us posted. Sometimes it's good to come on here and just let it all out.

Take care.

Debi from Georgia

I responded on your thread about SFN . If you get a chance check out. I had for a short time used Lyrica and Cymbalta with nasty side effects. I know you had mentioned being on these meds. The Cymbalta caused me the "foggy brain" you mentioned. I needed to get off asap. That might be adding to some of yours issues as well.

I think the hardest thing for most of us to deal with is feeling guilt about complaining or the inability to clean, cook, etc., as well as we once did. Also others thinking we are faking really hurts; especially family.

Gerry

This is a great place

Hi there

I found this forum early on in my injury and have hung out here because it's such a good place. I got no info on food, vitamins or supplements from my neuro, but luckily I found that and people who would GET IT here.

One thing you might try with your family is this. There is a good series on YouTube called YOU LOOK GREAT inside a mTbi. It takes about an hour to watch. If they would watch it with you ith could shed some light.

All brain injured people need some space and slack.

Wishing you a good day

poetrymom

Quote:

Originally Posted by SarahSmile0205 (Post 1076497)

Ditto!!!

I truly would think I was going crazy if it was not for the people here!!

I understand your frustration! Last night I got a text from a very good family friend who is 67 and immune compromised... since my accident he has been diagnosed and is now cancer free... CANCER... CANCER is cured on an imuno compromised 67 year old man before my head heals... REALLY!!! (that was my low blow of the week)

Oh wow. That was a very low blow. This head stuff STINKS. And, I agree on thinking I'm going crazy. I really wonder that sometimes and coming here a couple days ago made me feel not so alone in the world. It's comforting to know that there are others that get it.

Quote:

Originally Posted by music-in-me (Post 1076579)

Hi Superstition,
You make many excellent points.

Just seems to me I'll end up sounding like I am a complainer, or I've given up trying to get better if I don't respond positively.
This is me too. Usually, I'm also just too tired to explain. My husband keeps telling me that when people ask how I am, I need to really tell them instead of just saying "fine". He's probably right but it seems like too much work. LOL

Without the proper education in brain injury, we probably would be saying or doing similar things in our ignorance just to try to make them less different than us or themselves before their injury.
That's a very good point. The general public has no idea how bad this is. Even doctors don't understand. My ER doc told me I'd be just fine in 2 days.:rolleyes:

But in truth, if you ask your family if this is what you are, they'd probably more than reassure you that your worth everything to them.I know mine tells me this. Not necessarily aloud, but with every kind thing they do for me daily.

Take care, M-i-m

This is true also. My husband has told me over and over that this has been such a good lesson for the whole family to see just how important I've been to them and they were taking all I do for granted. I still find myself wondering how long it will be before this just gets to be too much for everyone. It's definitely something I need to work on though---the problem is really with my thoughts and not with them.

Quote:

Originally Posted by poetrymom (Post 1076648)

Thank you for reminding me about that series. I watched it when I was first injured but forgot about it and never had them watch it. I think I'll try that.

Quote:

Originally Posted by ger715 (Post 1076640)

I also have been diagnosed with small fiber neuropathy. I am 77 years old and was in perfect health until 10 days after a high dose flu vaccine for persons 65 and over was given to me by my Dr on September 14 2012. I burn constantly all over my body. I have been all over including the Mayo Clinic and Cleveland clinic. I have tried all the natural suggestions as well as prescribed meds. Nothing seems to work. I even tried pain management. "I think the hardest thing for most of us to deal with is feeling guilt about complaining or the inability to clean, cook, etc., as well as we once did." I feel so horrible that we sold our beautiful home and moved to an independent living facility.

I have been told aside from this horrible condition I am a perfectly healthy petit women. This will not cause death. I guess as my neurologist at the Cleveland Clinic said" this is the new me". Adapt. At this moment I am on the last thing I am trying Lyrica with our any effect at all. I am taking 50mg twice a day. I am sure they will want to up it but I think I will elect to go off it and just try and learn to live with this horror that I feel strongly was brought no by the vaccine

Quote:

Originally Posted by Posada (Post 1077566)

Posada.....Adapt....easy to say but very hard to do. But I guess we are all finding our 'new normal' as they say.

I am so sorry you are going through this and had to sell your home :(

My journey with SFN is only a little over a year old and I see no end in sight. I have not tried anything except what the neuro prescribed but have decided to go on B-12 first and see if it helps any. I'm on gabapentin and a small dose of Cymbalta for the SFN....I take vicodin every three hours to try and keep the pain level to where I can try and deal with it.

Oh the joys we all share. Take care and keep us posted on how you're doing :)

Debi from Georgia

I find I have a hard time expressing what symptoms Im experiencing and how noise and light are affecting me. But i found the book "Brainlash" by Gail Denton really made a light go on in my head. I photocopied the checklist chapter of the book for my boyfriend and my mom and checked all of my symptoms so that they would have a better understanding. Its been helping because i can refer to it if I'm having a hard time explaining myself, which happens a lot.

I try not to take the things my friends and family say personally, I think they just don't realize what we are going through. So i think the checklist helps them understand a bit more.

Oh, I get that, 100%. My family does not understand yet (married 24 years) and I've been told to suck it up from time to time. I can't begin to explain how difficult work is with those issues. Memory and concentration issues as you describe them is the bane of my existence. YOU DON'T HAVE TO SUCK IT UP, you can adapt to your new reality. I'm finding that a smart phone can be very a helpful tool for remembering things and I'm trying other tactics as well, and the more I work at it, the more I notice little improvements. You can too.

Your brain can and will adapt if you give it the chance.

Jamie

Quote:

Originally Posted by music-in-me (Post 1076579)

Hi Superstition,

I know this helped me realize that those who haven't had our type of injury can't possibly know what is like to walk in our shoes. And we owe it to ourselves to give ourselves a break from trying to restore our former roles and abilities sometimes; maybe a lot of times.

Take care, M-i-m

This...totally my feeling today. I don't want to hijack anyone's thread I just am frustrated today. This post helped so much but especially the above quoted line. This is my first formal experience with a TBI and I am confused as a symptom, let alone what the heck I should be doing. Everyone keeps looking to me on what the next step should be and they keep asking me questions (when will you be better? should you see a neurologist? can't you do some kind of therapy?, etc. etc. etc.) I know they just care about me and want me to get better but it's like sheesh people, you are the healthy ones, can you read up or call a doc for once, instead of interrogating me! It is so frustrating and this post helped.

Quote:

Originally Posted by pedestrian (Post 1078169)

Thank you for that book rec. I'm having an impossible time with reading now but it might be good just for that checklist!

Quote:

Originally Posted by Lolo82 (Post 1078351)

This would be highly frustrating! I find myself really avoiding talking to anyone other than my immediate family. It's really just too much work to think about it all, let alone talk about it. My mom was grilling me the other day about when I'll be returning to work. She's not understanding how far out of the realm of possibility that is.