What other diseases, disorders & syndromes do we all have???

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Permalink Reply by Cynthia Cross on April 29, 2010 at 3:53am

I'm diabetic, have had a cervical spine fusion, gall bladder removed, 9 surgeries on my arms because my tendons and ligaments fall off my bones, MVD on the left side (now have TN on the right side), joint problems throughout my body, headaches from hell (even before TN).

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Permalink Reply by Angel Ryckman on April 29, 2010 at 12:44pm

I also have occipital n, chronic migrains, and my sister who also has the tn, has fibro, liver problems, depression, duh:) hope this is helpfull

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Permalink Reply by Julie on April 29, 2010 at 11:44pm

Hi Kimberley,

The Physician Asst. @ my neurologist said it's likely to have more than 1 neurological disorder. I guess my migraines & left arm's ulnar neurapathy were lonely. I've also got carpul tunnel, tendonitis, & lovely acid reflux. My mom does battle w/ Fibromyalgia & RA. I think everything is connected. It does make you want say stop, no more. Today, I went in for my 2nd mammogram this month since they said there was a lesion -but the ultrasound was fine. I have to go back in 6 mths. At least there are some boughts of relief. I hope you have a wonderful, pain free weekend.

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Permalink Reply by Kimberley Bauman on April 30, 2010 at 1:43am

Thank you all for your replies. I appreciate the feedback. Sometimes I feel lost in the big picture. It's difficult when I see the doctor and they just want to focus on one thing. You know those maze puzzles where you keep going to dead ends? That's how I feel. So now all my pain will be blamed on fibromyalgia and diabetic neuropathy. So when do I know something else is wrong?

Also, my TN was on the right side of my face. Lately I've been feeling an electrical shock sensation on the left side in three places mostly along my upper jaw line and the side of my nose. It's kind of like a quick rubber band snap. Is this TN or fibro?

How many people only have TN and no other health issues?

Just curious.

Thanks again,
Kimberley

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Permalink Reply by Jon Leonard on April 30, 2010 at 3:40am

I have multiple problems, though some I think maybe due to my hereditary neuropathy, HNPP. (PP = pressure palsy) But Doctor opinion is divided on this. The HNPP gives me many compressive nerve problems, but I also have meniere's disease (or is that HNPP with vestibular and auditory nerve involvement), Migraine wih aura, Asthma and irregular heartbeat.
The TN is gradually getting worse, sometimes feel as if my left side of my face is frozen, but at the same time there's a burning focal point as well. Odd and quite unpleasant.
Despite having a hereditary disease , there's no family history, it seems that I am a new mutation.

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Permalink Reply by DARREN WATTLEWORTH on May 9, 2010 at 3:25pm

Hi Kimberley
I have BI-POLAR so the meds i take for this stop me taking meds for TN ( it will give me a seizure ) my doctor has given me TRAMADOL for the tn pain but it does'nt work, I am also taking anti inflams IBRUPROFEN and CO-CODAMOL for my legs and back and neck injurys i got from service in the ROYAL MARINES i was medically discharged in 1989 so have been in pain for a long time, the BI-POLAR is a nightmare and i have good days and bad days with my injurys the TN is just hedious when it attacks me i say ATTACK because thats just what it does, no warning no nothing i a have experienced physical pain with the marines but TN pain is just HEDIOUS anyway take care of yourself be good be careful be strong theres no shame in TEARS i should know !!!!!!!

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Permalink Reply by Vicki Anger on June 19, 2010 at 7:48pm

Kimberley,
You sound like me! I am also having HORRIBLE Fibromyalgia, and 2 failed tarsal tunnel release on my left foot. I still have loss of feeling in the foot, and a pulling sensation of the baby toe and the one next to it. I have had bilateral carpal tunnels done.
I was going to post a question for anyone to answer regarding nerve pain. My fibro started out as sore, deep pain in the muscles, NOW it is like nerve pulsing. My right arm, out of the blue starts stinging near the elbow, then I feel like a nerve pain, then the deep deep pain. For hours after that incident, my arm is very sore to the touch. I am very sad that I have this on top of the TN, that is bad enough.
Please write back, I am curious if you are having widespread pain that seems more like nerve pain.
I swear, I never thought my life would be like this. Sigh.

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Permalink Reply by Kimberley Bauman on June 19, 2010 at 9:07pm

Hi Vicki,

Yes, I have widespread nerve pain. My feet, legs, hands and arms below the elbow have nerve pain. Sometimes it is a sharp stabbing pain and sometimes it's a burning pain.

I am currently taking 100 mg. 2x per day of Lyrica which seems to be helping but it is not a cure all, only helpful.

I recently changed cars so I started hitting my head a lot on the door frame of the new car which irritated my TN! I went to the doctor and they decided to try something new. The doc felt that I hit my head hard enough to cause swelling inside my head and possibly around the Trigeminal nerve so they put me on 60 mg. of prednisone for 3 days then 40 mg. for 3 days then 20 mg. for 3 days and so on until I'm weaned off of it. Surpisingly it seems to be working.

Also, with my fibromyalgia I have a lot of muscle soreness and stiffness, especially in my back. Since the TN was acting up again, the docs put me on Baclofen 5 mg. 3 x per day which is very helpful with the soreness & stiffness. I've been having wonderful nights sleep and I'm waking up very refreshed and happy. Again, the discomfort and pain is not gone, just greatly improved.

The down side is that I am currently on a total of 17 prescriptions. I wish I didn't have to take so many meds to feel partially normal.

Kimberley

Vicki Anger said:

Kimberley,
You sound like me! I am also having HORRIBLE Fibromyalgia, and 2 failed tarsal tunnel release on my left foot. I still have loss of feeling in the foot, and a pulling sensation of the baby toe and the one next to it. I have had bilateral carpal tunnels done.
I was going to post a question for anyone to answer regarding nerve pain. My fibro started out as sore, deep pain in the muscles, NOW it is like nerve pulsing. My right arm, out of the blue starts stinging near the elbow, then I feel like a nerve pain, then the deep deep pain. For hours after that incident, my arm is very sore to the touch. I am very sad that I have this on top of the TN, that is bad enough.
Please write back, I am curious if you are having widespread pain that seems more like nerve pain.
I swear, I never thought my life would be like this. Sigh.

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Permalink Reply by Kimberley Bauman on June 19, 2010 at 9:08pm

Hi Darren,

I hope you are doing well. Sounds like it's been tough. I'm wishing you good thoughts!

Kimberley

DARREN WATTLEWORTH said:

Hi Kimberley
I have BI-POLAR so the meds i take for this stop me taking meds for TN ( it will give me a seizure ) my doctor has given me TRAMADOL for the tn pain but it does'nt work, I am also taking anti inflams IBRUPROFEN and CO-CODAMOL for my legs and back and neck injurys i got from service in the ROYAL MARINES i was medically discharged in 1989 so have been in pain for a long time, the BI-POLAR is a nightmare and i have good days and bad days with my injurys the TN is just hedious when it attacks me i say ATTACK because thats just what it does, no warning no nothing i a have experienced physical pain with the marines but TN pain is just HEDIOUS anyway take care of yourself be good be careful be strong theres no shame in TEARS i should know !!!!!!!

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Permalink Reply by Kristin Forrester on June 22, 2010 at 8:54am

I can relate. I have hot/cold shocks in my face and arms. They said it is not from the TN and didn't know what that was?? Aren't they the neuro.?? I was told I had mild nerve problems, DUH!! I have sciatia in my left leg and aching pains in both legs, mainly at night. I feel like I am getting nowhere also. I have had this for 5 years now. I have had several concusions to my head in the past 4 years. First I slammed my head/ear in the drivers door of my truck, then I slammed my head into a wall along with hitting my boyfriends head into mine, then I had a window fall out onto my head, and finally the last performance was I hit my head on a wooden beam coming up the stairs from the basement!! Bad luck right. Was thinking that these episodes could have triggered my TN? The doctor didn't give me an answer. My TN pain is mainly on my left side and goes into my upper teeth/nose and eye. Especially if I am in a cold breeze. I recently started having sharp pain when someone patted my on the back and when I spoke loudly??? I have to ask my neuro. about this. They told me I don't have Finromyalgia. I do have carpal tunnel. My mom seems to think that it started when I was younger and the dentist hit one of my nerves. I have had several root canals also. My grandmother also sufftered from this. I wish my life would go back to "normal". Best of luck to you.

Kimberley Bauman said:

Thank you all for your replies. I appreciate the feedback. Sometimes I feel lost in the big picture. It's difficult when I see the doctor and they just want to focus on one thing. You know those maze puzzles where you keep going to dead ends? That's how I feel. So now all my pain will be blamed on fibromyalgia and diabetic neuropathy. So when do I know something else is wrong?

Also, my TN was on the right side of my face. Lately I've been feeling an electrical shock sensation on the left side in three places mostly along my upper jaw line and the side of my nose. It's kind of like a quick rubber band snap. Is this TN or fibro?

How many people only have TN and no other health issues?

Just curious.

Thanks again,
Kimberley

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Permalink Reply by jamie leigh on June 22, 2010 at 10:31pm

I wonder how many of us have had extreme emotional pain for many years before TN. Also, how many of us are highly sensitive people...how many of us have been worriers all of our lives?

For me, my only physical health issue is the TN; however, I've been forced to realize throughout these past 7 months that I need to resolve some emotional issues also...pains from my past...lots of them...

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Permalink Reply by Kimberley Bauman on June 22, 2010 at 10:56pm

Hi Jamie,

Wow! I never considered that aspect of it before. I suffered extreme emotional pain for years including being severely beaten when I was a child of 12 yrs. of age to a very abusive marriage. However, I recognized about 13 yrs. ago I needed to change my life, so I did.

I am currently working on learning how to relax. Very important! Including, learning how to deep breath.

Because of my Fibro flare, the return of the TN pain, the memory issues & hearing loss I entered counseling again to learn new coping skills. I did not really think that counseling would help, but it has! At my very first appointment I regained "hope". I didn't realize I had lost all hope of ever being free of the pain. I may have to have medical intervention, surgery, medications etc... but the pain always has gone away at some point. That is my life experience, and I'm sticking to it.

My 2nd appointment I recognized how important it was to relax and learned techniques to do so. Very ENLIGHTENING! My very first weekend of remembering to breath deeply was accompanied by less pain immediately.

Now I'm not saying all is perfect in my world, but hecky darn, it sure is a vast improvement!

I think you're on to something!

Kimberley

jamie leigh said:

I wonder how many of us have had extreme emotional pain for many years before TN. Also, how many of us are highly sensitive people...how many of us have been worriers all of our lives?

For me, my only physical health issue is the TN; however, I've been forced to realize throughout these past 7 months that I need to resolve some emotional issues also...pains from my past...lots of them...

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