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The UKFibromyalgia Forums • View topic - New member wanting some advice



New member wanting some advice

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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New member wanting some advice

Postby Jasonw » Wed Nov 16, 2011 10:28 am

Hi everyone I'm Jason 42 yrs of age.
Some general history: Had car crash in 1999 and as a result of the whiplash I had on going neck problems on & off until it peaked in 2005 which is when I had Cervical Disc C6-C7 Removed, I had a bone implant taken from hip and Tantilum (not Titanium) fixings. Job done no real issues and returned to my love of cycling (around 60 miles per wk) In 2007 due to the extra strain on my other discs I had another prolapsed disc so C5-C6 was removed (also the fixing from previous op was removed due to swallowing issues) this time they inserted a Titanium Cage within the spine for bone to grow through. A while after I was diagnosed with Chronic Pain Syndrome & Osteoarthritis in the facet joints below op sight. Due to severe shoulder/neck spasms and everything they tried failing to have any impact I had Nerve Ablation (Burning) done.

Long story short 4 days later I have suffered severe fatigue, walking difficulty (in & out of wheelchair), speech stammer when fatigued etc. Never had physio for neck as they all ran scared to touch me & no luck with my pain team. 7 months ago I started have non epileptic seizures and it wasn't until recently due to them being so severe & lasting up to 8hrs! I was sent to Frenchay Hospital where I stayed for 7 weeks! But received Excellent care in all areas, from a Neuro Physiotherapist for my neck/Doctors to deal with depression/Neuro Psychologist & I eventually found a way of turning off the seizures!! I was diagnosed by a new Pain Specialist as having Fibromyalgia plus ongoing post operative neuropathic pain. I am and have been for a long time on the right meds. (Only been out of hospital two wks today)

My questions which may sound trivial compared with what I have gone through are the following:

Does anyone with Fibro suffer incredible pain in any of there finger joints, as I am. It does not curl my finger or click (as does trigger finger)
But is sore to press (and agony in finger itself) ?

After 2.5yrs I can still only manage a very short walk before my legs give way due to fatgued. Is anyone else in that same or similar boat?

And finally (thank goodness I hear!) I am about to start a one month trial with a Alpha Stim 100 unit. Has anyone tried one of these either for anxiety, depression, Pain or fatigue and accentually did it make any difference either big or small ? (I'm not expecting miracles but cautiously optimistic!)

If you have got this far I'd like to thank you very much for reading. I eagerly await any response, thank you.

Jason
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Re: New member wanting some advice

Postby Ouchy » Wed Nov 16, 2011 11:35 am

:D Hi Jason and welcome to the site, I am so sorry to hear that you have had such a rough time and I hope things continue to improve big time for you.
Pain is never trivial in my opinion as it affects everything we do especially when we get a new pain that we had not before experienced.
I have pain in fingers and hands and the some of the joints nearest to my fingernails I did see Dr about it a long time ago and was told, yes fibro causes finger and hand pain, after all there are ligaments and tendons in your hands ( :shock: oh how rude i thought i not that stupid am i :roll: ) and was also told that i am also getting osteoarthritis in my hands (have it in my spine already) and the finger joint pain is caused by osteophytes as they grow ( the spur thingywotsits that form on the joints)
I have found hand pain to be very very annoying as the more i use my hand the more it hurts, just like the rest of my body so I have to rest my hands frequently yep just like the rest of my body lol, I have found that soaking my hands in some hot water sometimes helps other times cold water helps, as always with fibro its trial and error to find out what helps and when and that in itself can be very tiring.
I can only walk very short distances as i get extreme pain in back and legs and get totally exhaused, when the fatigue kicks in I have no choice but to sit or lay down otherwise I am on the floor b4 I know it, then I do have a major problem as I cant get myself up.
Sorry cant help with the Alpha stim thing, but i expect someone else on here will
Ouchy x
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Re: New member wanting some advice

Postby animalhouse » Wed Nov 16, 2011 1:35 pm

hi, jason :wave:

my fibro was diagnosed after car accident feb 2010 so am at the begining of your journey in lfie. :shock:

i just was nver able to shake of the pain in my hips, knees, soles of feet, elbow adn hands and the extreme fatigue that comes over me.

i have had physio, osteo, massage etc since then and it does not cure the pain but just acts as a distraction. :roll: i've even ran my feet over the back of the dog when they hurt as he has quite course fur. :crazy:

as well as meds i use wheat packs, heat packs that click, back support, wrist support bandages and splints with metal support bars, tens machine................swimming and exercise. :idea: :idea:

i have spent the last 18 months basically become consumed by the pain and not prepared to accept it is lifelong and trying to cure myself but nothing has workedc.

i get terrible pains in hands/wrists/end of fingers where i spend ages pulling, pushing holding them up in the air.

i try anthing to try and get rid of it it is scikening.

hope this new treatment works for you, good luck.
:fingerscrossed: :wave: :wave: :wave:
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Re: New member wanting some advice

Postby ladygriff58 » Wed Nov 16, 2011 8:30 pm

hi jason sorry 2 hear what u ve been through the last few years hope u feel a little better soon :) ive ad fibro for a few yrs. i get alot of trouble with my hands, their always cold they swell and their so painfull. my fingers r bad too, an also my feet :!: im avin a scan on my hands+wrists 24th nov, they lookin 2c if i got rheumotoid arthritis. already got osteo :(
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Re: New member wanting some advice

Postby shazq » Wed Nov 16, 2011 9:52 pm

:welcome: to the forum Jason :wave:

Sorry to hear about everything you have been through. :hugs:

I have pain in my whole fingers and hands and often get pins and needles, also get them in my feet.

I can only walk short distances the more i walk the slower i get and the more my pain increases, my legs also just give way, i have had a few falls so always use a walking stick now.

There will be lots of us interested to hear how you get on with trying the Alpha stim as it has come up many times on the forum.
It is very expensive and its just like a Tens machine which is alot cheaper. Out of interest have you used a Tens machine before? it would be interesting to see if there was a big difference. Please keep us updated. :goodluck1:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: New member wanting some advice

Postby FluppyPuffy » Wed Nov 16, 2011 10:28 pm

:welcome: to the forum Jason :wave: :wave:

Sorry to read what you've been thru on your journey here. Now you've found us tho, we will try and help and support you with the trials and tribble-ations of FM. There is a lot of info and advice on here, so hopefully you'll be able to find some answers to questions you may have, as well as tips and suggestions to help you along the way :clap: :clap:

I have problems with pains in my fingers, and in fact all of my hand, as well as my wrists. And my problems may stem from a neck injury caused in a car crash as well :yikes: :yikes: I had a subluxated and fractured vertebrae (C6) which was eventually wired (titanium for me :!: :!: ) and fused to C5 and C7.

I've been finding walking difficult over the past few weeks/months. I'm slowing down. to the point where it now takes twice as long for me to walk any distance :facepalm: :facepalm:

And finally, the last question about the Alpha Stim (Yay :clap: :clap: I made it all the way thru :mrgreen: :mrgreen: ) We tend to be somewhat sceptical when something makes such sweeping claims about what it can do. These schemes tend to be very expensive and target those who may be more vulnerable and likely to pay out in the hopes of finding that miraculous "cure". Whilst there will no doubt be elements of truth in what it is said the aplha stim can do, try to be prepared for the fact that it may not give you the amazing results that you will probably be desperate for (just like the rest of us :? :? ) With things like this, if it was really producing the things it claims for every user, then it would be all over the media, and health services would be actively promoting it as a treatment for us.

And make sure you've read all the small print about the 1 month trial as it's not unusual for their to be things in them which means whatever happens, you've still have to make some form of payment.

Sorry it's not a really bright and positive set of answers to what you are asking, it's just that there are some many things out there touted as THE thing to cure everything including the common cold :facepalm: :facepalm: :facepalm: I really hope the alpha stim thing makes a huge difference to you, then you can come back on here and go :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: at my sceptical response :fingerscrossed: :fingerscrossed:


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Re: New member wanting some advice

Postby mightyatom » Fri Nov 18, 2011 11:43 am

Hi Jason,
Sorry you've had such a rough journey, and I hope the alpha thing works for you, I've not heard of this..
My legs give way all the time... I have two sticks and if we are going anywhere where I know staying on my feet cannot be avoided I hire a wheelchair for the day.

I get fatigued very easily - and cannot remember the last time I went anywhere just for the sake of having a walk in the fresh air.

My hands hurt a lot but I think that's the cold more than anything.

:goodluck2:
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Re: New member wanting some advice

Postby denys » Fri Nov 18, 2011 11:37 pm

Hi Jason and :welcome: sorry to hear of your continued ill health :fingerscrossed: the alpha stim helps :goodluck2:
Denys

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