Central Nervous System HyperSensitivity

[Rosetta2014]

I have been diagnosis with Central Nervous System HyperSensitivity which includes Fibro, CFS, IBS, depression,Trauma and about 5 other things. It is also genetic.

Has anyone received this diagnosis or Is anyone familiar with this.

instituteforchronicpain.org...

[Hidden]

Hello Rosetta,

Though I've not heard of this as a diagnosis, I use the term myself as it seems to explain the broad range of symptoms I have.

The two things that have helped me most are Mindfulness and the Alexander Technique. The latter resulted in the most improvement, because its primary focus is the nervous system, whilst unifying mind and body. I am just a beginner and have a lot to learn but its an enjoyable process made more so by tangible improvements.

It can be frustrating, not knowing what you're dealing with, so well done for getting a concrete diagnosis - and good luck on your journey.

[Rosetta2014 in reply to Hidden]

Thanks Soteti

[Hidden]

Hi I have read that some doctors in the US would prefer to call fibro by this name as it seems to describe the symptoms more accurately. Fibro simply means `muscle pain.

Just some thing I read and I dont know how accuate it is.

sue xx

I have read your link and found it interesting and confirms some other things that I have read. thanks.

[Mooster]

I have recently (this week) been diagnosed with this, but it was regarded as just another one of my conditions, rather than including the others. I have been prescribed Pregabalin for it. I have tingling, pain and numbness in fingers, toes and scalp. Interesting link, thanks Rosetta. How are you being treated for it?

[Rosetta2014 in reply to Mooster]

Mooster, I was just thinking you know even the researchers of this disease get confused when trying to interpret their findings as to what it is and how it works.

[Rosetta2014]

I was on 225mgs of lyrica twice a day + 100mgs of Sevella twice a day but the lyrica caused swelling in both legs and feet so It was Stopped when I was not able to take it in any dose. So I am still on the Sevella and he has added Bupren/nalox but I because of the price we are starting with 8mg of Buprenorphine Sublingual Tablets twice a day I should start it Friday waiting on insurance preauthorization.

[clare_hart]

As if it isn't bad enough to say fibromyalgia to people and have a lot of them thinking, hooey, try giving them a mouthful of Central Nervous System HyperSensitivity. At least they might be impressed, having never heard of it before. As if that should make any difference.

Still, it's kind of a long title. Maybe something shorter like CNS Reactivity . . . and if anyone asks what is CNS, then give the explanation.

At any rate, it's better than Chronic Fatigue Syndrome.

I hope you find the proper treatment for such a myriad of illnesses. I know I have many of those conditions and we are not alone. ((hugz))

[Rosetta2014]

i agree Clare_Hart, hearing it for the first time and finding out it might be to late for me to be helped then realizing it's the same thing just a different name and it grouped all of my medical problems together into this one big Name great its all one big mess.

[TheAuthor]

Hi Rosetta2014

I have read your post with so much pain and sorrow for what you have been forced to endure and I genuinely hope that you can find some resolution and relief to this issue. Fibro is horrid enough but to have these extra afflictions on top sounds awful.

I sincerely hope that you find the answers that you desperately desire and deserve.

All my hopes and dreams for you

Ken x

[Rosetta2014 in reply to TheAuthor]

Thanks Ken, I just got the Buprenorphine and took the first dose yuck yuck it's taste horrible and dissolves slow.

I just I am so glad I found this cite just to be able to chat with people who understand. I am home alone my husband is a trucker and he's gone for 18 days and home for 4 days but we talk every 3 to 4 hours if only to say I love you.

So this is a life saver.

[TheAuthor]

I will keep my fingers crossed that the Buprenorphine works well for you. My mum always use to say the worse it tastes the better it does you? It cannot be easy with your husband away so much, especially if you are not feeling too well?

Take care

Ken x

[Rosetta2014]

It's really hard on us since I have been having at least 1 to 2 surgeries a year for the last 3 yrs. and I am home alone. But he can retire in 2 yrs, but he'll still have to work but it'll be part time.

[mitziblue]

All these symptoms plus others = Fibromyalgia. It's a horrible disease. Plus it gets worse over time. Hope you are feeling as good as possible. If it gets unbearable go to a pain clinic sweetheart. It saved me as I was at my whits end. I still have pain but at least my life and pain are bearable. Hope this helps!!! xxx Mitzi

[Rosetta2014 in reply to mitziblue]

My doctor is with a pain clinic

[mitziblue in reply to Rosetta2014]

Have they tried you on Opana ER? It's been my saving grace.

[Rosetta2014]

No, but if Bupren/nalox doesn't work I will ask bout it. I took my first dose last night and I slept 5 hrs. that a miracle by itself, but I am very nauseated. the pain and stiffness went from a 7-8 to 6-7. I'll keep you updated.

[lifeofpain]

Hi

I am same. My system shuts down . Sick sick sick cant move . It is like a scales that wont equal for sometimes hours. No pills. Just hope to return to normal soon. Dairy and yeast cause extra pain flare so I am gluten free. Better food but lots more money. I feel like I have been on a merry go round. How do you cope? Apart from the fact I never had pain relief for 4 years, all the tissue around my musles has gone. I lost over a stone in muscle tissue cant build cause causes too much pain. I wish you well x

[Rosetta2014]

I am trying to eat more organic grown foods and cut out gmo's the only dairy I eat is organic yogurt I am trying to eat only free range chickens since I have to eat chicken and yogurt I am also getting aroma therapy oil massages not sure if they work yet. My thyroid caused me to have a gastric bypass to stop the weight gain.