My life

Hi i am currently still seeking an answer to my chronic painful body.

It has been 10 years and still don't know why every day I feel like am walking to the left ,walking on marshmallows,unsteady on feet, sore Neck ,lower back you name it , But i always say there is someone always worse off than me

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  • Hi Scarlet, this is not a website to sell things to people l think that's called Ebay or Gumtree!!! I have been nearly 12 years in chronic pain being told its in my head getting sent mental health team etc it's been tough as l have had to push for every appt l could n should have got. I lost most of my 30's, lost chance to have kids due to nerve pain thanks to negligence, worse is that l was diagnosed with crps in 2009 but ignored by pain team n now breaking bones as crps has spread n still waiting see neurologist n pain team my ankle dislocated n both legs bones 3 displaced fractures n didn't operate instead made me weight bare on it all that was nearly 2years ago l even went private n that ortho wanted to put screws pins plates in leg n fuse ankle last Dec but as crps surgery is now impossible n still wearing moon boot but osteoporosis n osteoarthritis making it hard stay upright. I can't drive, having to move home lost independence amongst many other body funtions not working. I got all my docs notes n medical records and it is sooo scarey what goes on in nhs, all the psychologists n psychiatrists reported no mental disorders n that l was positive etc but needed help from pain team..... They did nothing n now l don't even recognise myself or life but l still have my 2 wee dogs who are a great comfort when pain too much for company. At times l'm also exhausted from trying to be stronger than l feel but please DON'T GIVE UP!!!! I'm 45 now and started find out from patient services in nhs what gps can n cant do along with consultants n loads more so believe me l won't try to end my life again as l'm worth fighting for even if nhs doesn't think so. However after 3 years wait l saw psychologist who l showed my records infact she wanted me go AnE couple times as legs shaking so bad l fell over but l get treated like a joke so pointless putting myself through the humiliation and pain hanging about for hours just to be told its anxiety!!!!! Anyway psychologist can't justify seeing me as no mental illness or disorders but did tell me get lawyers as have 2 consultants have as well. Sorry this is a jumble but been a long night l just got bit confused with the magnet selling, you can look into that yourself online. ANYWAY.... Im unable to type much nor very often l just wanted to let you know....PLEASE DON'T FEEL YOU'RE ON YOUR OWN, YOUR LIFE IS JUST AS IMPORTANT AS THESE DOCs etc, go to advocates get help from citizens advice to try n get nhs to do correct investigations n get the proper help. In march last year one ENT said in letter tp gp he had checked my ears nose n throat n nothing wrong but as with all schizophrenics he had to check which he did then discharged me???? He couldn't get tubes up nose, or thing in ear as felt like lit match (lwas diagnosed with aytipical trigeminal neuralgia in 2008 but none of meds worked(it is spread from Crps) anyway....5months later l see another ENT doc (dentist referrred me) who thankfully ignored last ones comments n sent me for scans n then told he had found thickened membrane innose to sinuses, and also a tumour (premorphic adeanoma) in deep lobe parotid gland so need more tests, l got ultrasounds n a videofluoroscopy as lm struggling swallow n tongue feels to big for mouth, after ultrasound l saw head n neck surgeon who wants to keep eye on tumour as its a very long n difficult surgery being in deep lobe l understand n handed it over to God, l then got results of swallowing video n turns out nerves aren't making my tongue, throught or epiglottis open enough n food stuck at back of tongue even repeat swallows so he, along with bowel specialist n gynae etc all wrote saying need help from a neurologist and should be under pain team even acouple told me get lawyers as my old gp wouldn't refer me to anyone for years just told me had hyperactive nervous system !!!!! Loads of other things l have thats been found now after 12 years thinking maybe l was nuts but l couldnt make up the severity of this pain n other weird things n knew l couldnt make my foot go black n pulse dissapear, or mentally make 3 discs bulge in lumbar that they found in 2006 when l was in hosp but never reported n now l also have annular tear L3-L4 but nothing ever been done until l did research when able (l used to be a sports development n coach) so diploma in anatomy n physiology helps me see that these gifted educated so called docs can't​ even read or action a very abnormal pelvis 3 page mri scan but write all normal to gp??? I had solid masses on my pelvis n impactation but notbing done until now 10years later. So.... Remember that Hopelessness is just a feeling NOT A FACT, try n not isolate (yep l do still when painbad which is quite a lot) Also you are not a lesser person because you're unable to do things due to pain and please.... Keep strong, Keep it simple and most off all Keep going!!!! Good folks on here who will give you good advice and most importantly we all care as who else understands or gets us. You're in my prayers as are everyone else. God Bless x

  • Thankyou so very very much for taking the time to write this to me, as it has made me feel a little better after being in work for 8 hours on my feet and constantly unsteady , i am e xchausted now but your message makes me think , that the doctors wouldn't put up with this, so am not going to .

    I finally see my pain specialist on Friday this week , after they cancelled appointment in December.

    I am going to sit and write every last detail of my problems with neck , back and this daily fight of unsteadiness .

    I thank you so much you are a very inspiring person.

    Will put a message on on Friday to let you know how I get on

    I think all we need is to find that right person at the right time for treatment and help

  • Hi there sorry to hear this.

    Only my thoughts on this . I had lots of issues with balance which was affecting everything to do with my crps.

    I was amazed to find out how much balance was contributing to my pain.

    I would start with neuro chiropractor.

    Sorting your balance may help its to do with muscles being used because your brain is telling your body to straighten all the time .

    It can be adjusted with things like watching TV with one eye closed listening to music in one ear plus some body manipulation.

    It might be worth your time to check this out.

    Cheers dave

  • Thankyou I will look into this, i will try anything that will help

  • Be thinking of you tomorrow Scarlet. Prayers going up that you get the help you need, Debx

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