Fibro, overdoing it, brain fog/speech probs

Hi Hun , long story don't want to go in to detail here, but paying a mortgage on family home and can't pay rent elsewhere x just been panicking today , feels like your head isn't right xx 

take care of you x 

Hi Jill128

I feel for you, we are in rented at the moment and are moving home next month with a small mortgage. But stil have to pay the rent here till end of year.Its so stressfull.. I am not sleeping much and are getting dreadful headaches-brain fog and everything else that our wonderful friend fibro chucks at us. Hope you can have a good day.

Thanks Kaz 

not that I want you to suffer, but it does help that you are not on your own with these weird and different parts for fibro 

take care of you x 

your definitly not on your own hun with these symptoms its amazing what different symptoms fibro likes throwing at us.Paceing yourself is something we all have tolearn to do. if we over do things fibro makes us pay for it. take care gentle hug

Hugs back to you Hun, wouldn't it be great to shake your head and it goes away xxxx 

Thanks Debbie 

mot had the light headed thing before and stuttering , started to panic that it was something else xxx 

hugs to you and although we pay for overdoing things, would rather do that than nothing at all xxxx 

Thanks Lisa 

fibro really does get you at times, trying to de stress just hard right now , thanks for your thoughts and hugs back to you xxx 

Morning Jill; yes, I have found that with every extra stressor (just as you are having now, with house moving and relative in Palliative care), is just enough to set off our Fibro, and in my case, have found it affects another part of my body.....when we moved house last year (thinking a down-size was in order), my TMJ started......even now to even go away for a break/holiday, is enough to set me off, with another issue (or flare as others say).......but to me, I actually find another part of my body goes.........so do So hope this does not happen to you!   as for the "stuttering/brain fog", always there, and the misery/tears too, lately.....am joining you in your feelings................Bron

Live with it on a near daily occurrence...  to the point when stress is high my brain just shuts down completely and even the messages to my limbs fail me...  Balance goes right off.   For me I think the balance is also a visual thing.. As I can deal better with balance in open spaces, put me in a hall way or enclosed with moving things or people and I'm all a punch drunk sailor...  likened to concussion.

I've been in similar stressful moves and I struggle to get assistance at any time for help so I've been left mostly struggling in painful agony, stiff agony, and huge fatigue.  I've managed though to get things done, albeit slowly, painfully, BUT I've had times I have just crashed and burned and cannot get up off the floor, cannot eat...  A real mess!   It has cost me hundreds in extra rent because of it...   Totally ripping me. But what can one do aye!   I've got to the point I've pushed so hard I've collapsed in a comatosed state of sleep, when finally awakened it's the same stressful condition I have to live and deal with, no one to help move boxes or shampoo carparts..   I have had at the last hour, at different moves, some one to assist moving bedroom suit mattress and chest draws, last move the kind landlord to where I was moving to assisted me with the same.  Gosh I was so relieved...  It took me months to get things organised, days to get my bed put up as my hands didn't belong to me, tearing pain and body swelling..Sweats like you wouldn't believe due to the severe body pain. Trying to concentrate using ones brain in that situation is not a practical 'go to' situation, as all it wants/needs to do is shut down... sleep.. I absolutely fear having to go through that all again now..   It's been 3 yrs and I still have stuff in boxes I cannot deal with.  

I/we once lived freehold, huge house etc... till partner couldn't cope with my situation, didn't want to believe I had anything wrong..  He was violent with it, so I just left after 17yrs....Had to survive on my half which wasn't much as he'd mortgaged the property over time to such a level it made me stress terribly...  One has to use up ones funds here before getting assistance if one is not able to work....I was forced to do just that.  It's been a cruel road, but hey, there are folks living under bridges in as much pain as we are to... I keep reminding myself of that...   

Gosh Deb;  Everytime I read one of your inputs, you make tears come to my eyes.....You are One strong lady who has had to Fight hard for every little Step...........nobody can take much more than you have.......you have written re the Health System and how hard it is to get your treatment etc, now re the housing issues and doing it on your own....I Trully Admire your Inner Strength and Courage......the other interesting thing that you mentioned, is the Assistance from the Government.....this is something that I find different (or not sure how it works)....for others over the seas talk re applying for Monetary Assistance, even when partners are working etc, but we, too, here in Aussie have to have Nothing in Bank, to be elligible for any asistance.......sending you my thoughts and hoping things somehow improve for you...........Bron

Hi Bronwyn, I so hope I don't put you and folk on downer trips reading my past history and current issues/plights...  I do seem to wind up writing novels...   I think it's due to the fact that I find mentall it can be a challenge to converse verbally.. The brain fob/swiss cheese in combo with the muscles of neck/mouth/tongue etc gets in a tangle and the fuses pop! hahaha.   I actually also find it far easier to type, than hand write anything!   Weird but true...  Brain just doesn't connect well on days I have to physically write.  I do get very sore wrist and fingers from typing after awhile but hey, that's a small compromise.

I reckon I could write a book about our Health System here and my local Medical Centre where I actually live.

I went to the Medical centre here in New Plymouth, it's a Walk In Med Centre with a Accident and Emergency section, and Pharmacy.  It was going to cost me $70 to visit a doctor, who I was told probably won't be able to help me with a 2nd opinion or a referal because I'm not local to the area.  WHAT the Heck or folk supposed to do then?  I/we are then MADE to be at the Mercy of our Local DUD and knowledge lacking Medical Doctors!!  Just how Cruel and unjust is that!  I strongly feel like ringing the Medical Ombudsman..

don't appologize Deb............I think most of us are in the same boat, when it comes to trying to Verbally communicate (all of your probs and "finding that others don't want to listen when we have something to say") is a common prob for all of us who have Fibro......and as you say, if the GPs don't Undersand, or not Directed by suitable Specialists, then you (and others) end up in "No Man's Land"..........as for the cost of visiting a Clinic, do you not have A Health-care Card, as I would say that someone in your position, should Definately have one....have you contacted a Social Worker in your Medicare Centre.....on the one  Occasion that I went (when I found things becoming hard at home), I found them to be Very helpful...(but don't be directed to a Counsellor....a Psychologist can do ALL and more....even to directing you in the Right Direction for help, and proper referrals......hoping that you have them on your Public Health System.....here in Australia, you can receive 10 free consultations, after getting a referral from your GP....tell him you need to talk to one)..............I Totally agree with contacting the Powers that Be, in order to let them know of the Common Situation/s that you and others find yourself in.....even your Local MPs/Federal MP....if No-one speaks up, they don't get the REal Views, and think all is dandy......I know that I have been Very lucky with my GP and Rhuemy/other Specialsts/physios etc, as I have been given the correct treatment, and understanding......perhaps before Completely settling into your present abode, you may wish to cross the strait, and live in Australia (QLD SE) to be exact????  we could help you more than the help that you are getting, as I said earlier, I Really feel for you.............and as for the use of the computer, this is Our way of communicating to others who understand, so type away....so many of us write Tomes, Too.......Bron

Hi Bronwyn.....  I would now need to win Lotto to afford to move or do anything now.. lol...    I understand from past converstations with my dear friend who passed away at 56 yrs, that in Melbourne she was given all sorts of aid, and assistance and her partner was paid as her carer, she was also financially looked after to.  Her specialist was amazing.  Here I am learning more and more that our system simply does not cater or care for 'loads of folk'...  

I had to forfiet my really good Health Insurance do to nolonger being able to afford it.  I would have been able to use it for Specialists, I'd be in like flyn.  Sadly now on the cracks of society, your mud the GP's  don't want on their carpets, unless it's easy peasy cuts/bruises/broken bones/easily recognisable issues... or simple basic blood tests.  Other than that, not interested...   

I still don't know what the red things are on my shins, and my doctor won't be botherd checking out further.. He's got no time for that, nor is he interested, not even interested to send me onto a Specialist.  

One can understand now why folk are so so so frustrated, and why some folk die unnecessarily...  System is making me sick and tired battling just to have the chance of an appointment with a good honest thorough doctor!   grrrrr arrrrrhG!

Yes it's going to be a case visiting an MP, or again writing to the Ombudsman..AND our Health Minister!

evening  Deb;  I thought I had replied to your email earlier, but it "got lost"....I think my computer has Fibro Fog, too..........I wanted to say that Yes, if it means getting Better health treatment, write/talk with your local member (here in Australia we have both state.....which you may have/area member), and also to your Federal member (I assume you have the same Political System as we do here in Aussie)....it is there duty to act on your behalf.....if no-one lets/speaks up, they will never know how BAD your Health System/Services are.

Also wondering re the Red Things on Shins (sorry must have missed that earlier comment).....what do they look like...what colour......welts/blisters/sores....are their permanent/come and go?...are they spots/localized/long straight line?    raised/on skin....sore/itchy/Painful.....have you ever had chicken-pox......I don't know if you can send photo of same via this site???  but otherwise you could try sending a photo of same via PM/or ask for my private email address if you would like to show me?    I am wondering if it could be a type of Shingles, which would be very possible with stress.....I often get "small bunches of blisters that are purple/red in colour and painful", that only appear on the inside of upper thigh, when I get too stressed, and I feel these are  Shingles............let me know if you would like me to try and have a look.....or if something that I have seen before?   ......Bron

 

Hi Bronwyn just checking my emails....  thank you for checking up on me...very kind.   Just a heads up, our local MP's, (Members of Parliament who represent the local constituants) can mostly be a total waste of time.  They do NOT push anything to do with ACC issues, if they do make inquiries, they only go on the word/s of the ACC and your back at square one, been their twice with the local MP and the Opposition MP.  Both totally a waste of space, time and energy. Honestly, it's absolutely disgusting how our Medical/ACC now BIG BUSINESS $$$'s for the Government dictates and spins us the Injured and sick back on our asses.   Writing to the Government Heads is also the same response, zero nado zilch.  Appalling!  The Government/s (past and present) have got every stitched up tightly, and where there are loop hole they closed them down fast.  Devious is a light description.  Many hundreds of Court cases are still awaiting their turn... fighting the system because of the injustices in regards to 'their health'..   

The Health Commissioner is only working for Government, the Medical Board/Council are only their to 'Protect the Professionals'. That very statement was recorded on tape at a big meeting held and the Head honcho gave that speech!...  Human Rights here in NZ now is a total crock, it means nothing.  Nothing when it comes to serious matters that the Officials and Med Professionals want to sweep under the carpet.. The flout the Human Right Act and act on the fringe of Law... AND GET AWAY WITH IT.  We here in NZ are so dumbed down now, it's pathetic, inhumane, cruel, disgusting, appalling and NZrs only have themselves to blame because they don't band together and behave like the French do!!!   Honestly, it's because of National Health System vs ACC and the ACC is ALL and ONLY BUSINESS and Business Ventures to make more money for it's major players, Atos etc and the Government........ Sickening for a Social Contracted Public Owned State Service that isn't designed or meant to actually engage in 'Monetary endeavours to Make More Money'....

I am awaiting a phone call Monday or Tuesday from a Doctors Receptionist.  The Doctor himself is on a list who are savvy in the matters of Fibro..  I have asked for an aptment, but he only comes like once a fortnight to a medical centre here.  So it's a Tuesday 'hopefully' appointment.  I stipulated I want an aptment, for the reasons of a 2nd Opinion in regards to Fibromyalgia.  I will see how I get on getting the aptment.  Every other doctors rooms have turned me away.  The A&E walk in doctors don't do 2nd opinions only emergency medicine etc, and don't do referalls.  How the hell folk are supposed to get on I don't know!!!???

I have read on another persons post in a Fibro thread elsewhere that they also have Vaculitious or something spelt similar.  I can't remember the spelling at the present.  I googled it.. well blow me down with a feather!  AND my own doctor says he's never seen the likes before.  There are obviously many versions and simlar others, some not so nasty and some really are nasty...   I am going to push hopefully with this doctor if I can get in to see him and get him to diagnose me for that also...  I'll see if I can do the photo thing somewhere for you....

Medication/Trauma/viral/bacterial etc etc can trigger many forms of this problem.  Some versions are truly dangerous... yukky.   I've had in the past some repetitive nasty shin and calf knocks and bangs, coupled with the meds of which I take Ibruprofen/trams and Gabagentine...  In flares they don't go anywhere near the problems, and on bettter days can take the worst off when sitting quietly...  (That high pain tolerence thing is my worst enemy at times)  Anyway I've had these on my legs now for circa 2 and a bit years now..   And they are spreading...!! 

 

Evening Deb;  I was able to see the spots on your leg......they appear very similar to ?a "staph infection".....what happened/what were you doing just prior in a 2-4 week period, before they started to appear?   They do look like blistery vesicles (and is that Betadine that you are applying?)....it will dry them up, but if an infection in your blood-stream, they may become resistent to same???  Has your GP ever given you anti-biotics (even a triple repeat) to try and get rid of them (a swab needs to be taken first, to see what will work on them)......as they are sooo far apart from each other, they would not be Shingles, but then maybe????  small herpes vesicles, that would come out, due to the stress............I would ensure that a swab is taken, and trial at least 3 courses of something like Gentamyacin/Minamyacin.....otherwise (which I know is probably not a viable option for you), but a good Viral Physician Should be able to identify same???    Yes you are in a mess, and with the awaiting for a result for payout on accident, this too is an hard one......I thought that we in Australia, relied on Comprehensive Car Insurance, and depending who we have it with (which is our own choice, who we ensure with......this family is with Suncorp, who ensure against other car as well as the one we are in/driving.....but do pay that little extra for having this Full Third Party Comprehensive).....so if we do have the unfortunate happen, I do so hope that we do not have the same as you???     You are a blessing to chat with, as even though you "feel like you are in No Man's Land sometimes, you still contribute via  this forum, with your knowledge and comments.....will be awaiting for your next input....try some sleep tonight....you never know what tomorrrow will bring??? may even be That important drs visit (and if not, then we will wail for Tuesday's results)...............Bron

P.S   mean't to ask,  have you ever tried Amitriptylline (anywhere from 10 - 25+ mgms)....it is my saving grace as for the pain relief (this and the Gabapentin....along with some Valium at times, when my Neck becomes stiff.....Brufen only works when I feel as if my muscles are Inflammed...and this should only be taken for a few weeks max..as it has other side affects.....I find Amitriptylline stops the Burning pain, as well as a lot of the other pains that I get  I have trialed many others, but this is the one, with the Gabapentin sometimes 800 + per day, depending on how much pain, but both seem to help me cope.....I do support Sylvia in the usage of Oroxine, and am taking this too, but for the ME/CFS, but this is different to the Fibro, although both do seem to overlap in most cases......I will add that I also take Oxycontin 20 mgsm BD (which is where your Trams comes in, but Tramadol did nothing for me)....hubby says I'm a walking Chemist, and prob have shares in our chemist.......

Hi Bronwyn, I was trying to think back to when these began and I remember getting a huge under the skin Purple/red rash, but the skin on top was really rough.  It was disgustingly obvious rash and I was embarrassed to wear anything but my jeans/tracks/or tights so my legs wouldn't show.  The rash was only on my right leg.  Then much, much later, almost a year later the rash began to get slightly smaller and slightly lighter, but then as the rash was dissipating these things began to appear.  Some days they are fire engine shiny red, not blistery, and they do have a underskin central lump underneath each one.

No rash on my left leg but now the red shiny things are appearing and growing in size on my left leg..  ??

In regards ot my Court case thingy... It's not about money, I'm not entitled to any lump sum payment/s.  However if it is deemed I have been 'and I have been', illegally cut off ACC then the ACC will be advised to back pay me, and put me back on the 80% of my once salary.  (I was never a high earner back then but I loved my job. So 80% doesn't equate to alot), some WINZ beneficaries actually get more than what my 80% on ACC was!...)  Sadly one can wait a very long time for the ACC to actually cough up!   Then I would have to pay the legal beagles.. Nope won't be any change out of it, but I'll be back on the 80% of salary instead of under half of it on a benefit, AND ACC will have to then go all the way back through their procedures to re examine the situation, have me re examined and to cough up the treatment and rehab that I should have received.  The ACC will then also go through their devious report doctoring/spinning to get me cut off the books again.  It's how they operate, yet that is not what the system was designed for.  There are ALOT of us system abused people here in NZ.  Some injured suffering folk have committed suicide over the years because of what ACC have put them through. Some folk live in their cars, still suffering from injuries not able to get the treatment and rehab.  They live on fresh air and pain. I was talking with a winz manager not so long ago, she said folk think winz is really difficult but heck she said ACC is really bad, and even they 'the winz' have had real issues dealing with ACC.

Interesting time now isn't it..   We become inconvenient to the business aspect, and government aspect in society...   tsk tsk...

I have weaned of the larger doses of Tramadol as I found it was a waste of time, made no difference over the years... 200, 400 plus mg/day plus Ibuprofen 200mg x 10 - 12 tablets/day for 2 or 3 days on and off with the odd flareup days.  When I find they are not helping I go through it only with Tramadol.  Now only with 100mg/day to help keep the spine settled up round my neck and head.  Without that small dose, I am a floundering mess head and spine, which of course radiates out to my body.  I cannot function at all then if I don't have just that amount. 

I was given Amitriptyline for awhile and it dulled my headaches for a wee bit, but because I was such a mess with head trauma and swelling I wasn't able to tell what was what...  Spinal bruising, back fractures, neck swollen and rock hard tissue ridges round my neck, my head was so swollen the pressure was huge!...  I wasn't able to breathe well, shallow breathing basically from the top 2inches, I had to have my arms packed up with pillows beside me, almost to shoulder height so I could breathe 3 inches off the top.   My nose dripped like a funny tasting water, my eyes ran, and mouth hung open and I was dribbing into a towel.  I was like that for days..  I couldn't walk without being helped by the hands and it was a very very slow walk.  I cannot remember communicating at all, hours later, I don't even remember any pain killers except for Amitriptyline, I think they were 10mg.  It was like I was totally disconnected from my enviroment.  The Amitrip did help to take the edge off some of my explosive migrained swollen head, and I'd nod off in the chair packed up with pillows..  

Our Health system is lax when it comes to Head and Spinal accident victims..  

I actually managed to sweep the front yard here of leaves, and there was a lot.  Weeded down the driveway. Recharged two car batteries here as I was using the wrong charger on one battery and I thought the battery was buggered..lol.. dah me.  Finally had the AA chap mention about the battery being of a certain type and that I'd need a certain charger.. hahaha, Oh OK so I've been using the wrong one!  cousins partner has one of those, so spent half the day charging that cars battery on the correct charger. PHEW!  saved spending $200plus on a new battery!.   My cousins car had decided to beep at me to say 'I'm not going to start now either'.  So hence the call to the AA chap to come out.  Her car is a European fully auto and computerised everything, convertible.. 'nice', lovely car to drive!  

I haven't been well enough to go to far in either cars and hence being Winter the batteries are going flat. And we have had some really WET Windy weather No way will I use a car when I'm not feeling good.  And I love getting out and driving..  Well hopefully even though the weather report states very heavy RAIN, I may feel ok enough to take one car out for a real long drive with the dogs...  I could take a flask with me, my gummies, good wet weather gear and umbrella!

Well another early hour novel... lol...   I'll put up a post with a photo of Mt Taranaki/otherwise also called Mt Egmont.. as seen from up in the Reserve 1 minute from the door here in New Plymouth at my cousin and her partners place.

 

HI, is your ACC the equivalent to our Workers' Compensation....from what you are saying, above, it does sound similar.....and Yes, it does "try and get us back to work ASAP".....I have never had to use them, but hubby has a couple of times....when he badly fractured his L) ankle in 2000, by falling off a bridge, they were in  a Great hurry to get him off Worker's Comp....if we weren't seeing a Private Ortho Pod, who "gave them a Blast" , and told them "to leave his Patient alone", he would not be working now.. (I guess we were also lucky that we had him covered with Income Protection.....which covered our living expenses...as we still had 5 children at home to support)..............Bron

Hi Bron and dudes and dudettes...  Well interesting, I got a return call from the doctors room that I have been waiting on since last week.  This doctor only comes to the Med centre once a fortnight.  I should not have told her I was here for the next 5 weeks as how convenient she says no appointments for the next 6 weeks available. So I said when is the next date available then, reply not till the 22nd Sept...  I said 'I'll take it'. Her reply was, OH really, um ok, well then I'll ring if there is an appointment cancellation before then. And said, 'thats good, ok'..  Then her reply was I'll ring you before then anyway'..    

From the last sentence she uttered I am beginning to wonder if it will be a 'ring you anyway, with a fob off, and cancelation of my appointment!!!'...

Well time will tell, only hope that I get a cancellation appointment before then, as I'm actually going home before then...  hooohumm.  Unless my cousin is okay me staying till the appointment when they are back.

As I said, 'time will tell'... 

Hi Bronwyn... sorry I think I maybe (can't think for trying) have neglected to answer your question about our ACC that we have here.. Accident Compensation Corporation..   who are responsible by Law to 'Allow and pay for the Treatment, Rehabilitation and pay up to the 80% abatement.

However we have a very dodgy ACC who practice bad practices, delving into folks full medical files, cherry pick info and screw and mess with it those details 'Inhouse', then 'Summary Report Inhouse' to their designated doctors whom are paid HUGE $'s to give the answers that suit the Corporation to deny some people the treatment, rehabilitation and sometimes abatements.  

When folk are denied Treatment and Rehab which advocated by Specialists and it becomes a mighty messy fight which goes on for months and into years...   Reviews after Reviews..  Very costly,as Lawyers have to get involved mostly at this stage.  When you have Reviewers who are 'Paid' for and work for the Accident Comp Corp, you can rightfully be suspicious.  A lot of Reviewers have been making hideously ignorant, lazy, or of course led Decisions, by the ACC Lawyers.

A lot of these Daming Reviews are now being overturned in Court.  Amazing isn't how a Publically owned Corporation can 'use, abuse and wastefully spend the Publics own money', against them (the Public).  

Only those folk who have suffered dearly at the hands of this Corporation know the full extent of the devious actions they use.  

And they also ring up folk every week to say when are you going back to work?  Do you feel read now?  How about next week?  They drive a person over the edge as you and hubby well know.

Well it's been a rough week after the raking up of leaves the other day... grrrr   

And I only hope I can get to see this doctor before the 22nd Sept!!   Not holding my breath though.. and I am suspicious that the receptionist/nurse is going to ring me before the 22nd and fob me off with something that 'sorry we cannot see you, doctor is off sick, or doctor has an urgent...'....  And this will leave me hanging out to dry.

Sucks doesn't it... even just the simple thought of anyone of those possibilities...  :-(

Yes Deb; I do think that would be too much for me to fight.....I'd probably say "forget it", but know that people like yourself can't afford to do so......We do have a similar system (two by the sounds of it....one for Car Accidents.,  and the other for Work Related Accidents).....I have also had Income Protection/Permanent Disability Poliicy with my Superanuation...as having seen too many, like you, that something happens to them, and they cannot work....no-one expects this to happen to them, but it does, and then our lifestyles change......most of all, our Emotional States become shattered, and we become Different.........Bron