RA v fibromyalgia

thank you matron unfortunatly i had one treatment for Ra that i  couldnt tolerate (passed  straght through) the alternative is low  dose chemo that  can react  with your liver  they monitor this by checking the liver count in a blood  test  mine is already  high and after 6 seperate attempts over last 8 years  no one  knows  why

thanks jenny i have had  all the  test  andwas  diagnosed  with zeron negative  RA eg no rheumatoid  factor  but have had high inflammtion indicators in my  blood  test for a over a year as i understand it 50% of RA patients are zeron negative so this is not unusual.

what im trying to establish is the difference in the actual symptoms between RA and fibro one consultant  says RA and  another says fibro and possible RA as well i just  want to know which one i have  as i have  been waiting over a year to  get  treatment for RA and this new diagnosis will only delay treatment  further if i cant distinguish between the two deseases then how  do i know  which diagnosis is correct ??

If your sero negative but showing inflammation on scans not sure wether xray ct or MRI is best at showing that, in the areas that ra would inflame and there's damage I'd demand treatment, it's all very well them "sitting in the fence" while deciding exactly what autoimmune disease there is but it's not helping you.  Unfortunately they tend to do that when your sero negative as they want to give you the drugs that work best for whatever it is, but there are drugs that work for all autoimmune inflammation, however there are side affects for a lot of people, like steroids.  If your doc can't decide if find a rheumatologist that specialises in RA instead.  I'm currently of the undiagnosed, seeing endocrinologist, gastrologist and rheumatologist.  Similar symptoms to you but gastro symptoms also no blood inflammation only stool inflammation and occasional low calcium, also have hypothyroidism though that's been under control for a year now.  Think they are thinking crohns, Sjögren's, sero negative RA, but it's frustrating as I wonder what damage is going on while I wait up to two months for every test and I can't work 

i have been seeing  a specialist  rheumatologist  for  a year  he  diagnosed RA at my last appointment i expected to see him but it was a new rheumatologist and she  changed  the  diagnosis to  fibro myalgia the reason i havent had treat ment is  one type didnt agree with me  and  the alternative i cant have  as i  have a high liver  count  my  old  rhuematolgist was going to ask my Gp to refer me  to liver specialist to get a diagnosis on liver in order to bring it down  to healthy level  and  start RA treatment i have had an mri on liver and  they cant  find anything wrong  but  still my liver count reamains high (this has been going on for many years) my sister  had  crohns she was diagnosed while pregnant  that  didnt help as had to wait  for  sugery  but  once she  had  it  she is  fine  works full time as a teacher  and  has  4  kids

Your GP can access consultant bloods records etc I'd see GP ask to be referred to liver specialist on basis of those bloods, you won't have to wait for rheumatologist to do it, they will only send a letter to gp asking them to refer you anyway.  Do you have any crohns type symptoms it can be very subtle to start with

Gp  has  reffered  me  in past   and  they cant  find anything  wrong  rheumatalogist  was  going  to ask  gp  to  re open case as its preventing me  getting medication that now  wont happen as new rhuematologist thinks i have fibro so  liver count doesnt effect medss  i  just  want to  get to the  bottom of  if its RA or  fibro so i can be  confident im getting  the right treatment .no i dont have crohns symptoms i know ibs is a symptom of  fibro  but i dont have ibs  symptoms either

It sounds to me like you disagree with her diagnosis, in which case you could ask your gp to refer you to new rheumatologist? But that's not really going to speed things up.  Or arm yourself with your symptoms info and the info on past rheumatologist appointments and prepare to have an argument with her about it every consultant has a secretary number, call them and demand an as soon as appointment.  My friends fibro symptoms tend to be more frequent I'd say short and sharp on the joint issues the only distinguishing feature is those pain points for her plus she doesn't get obvious swellings in the joints but does get joint pain stiffness I mobility 

its not  that i  entireley disagree  with the  new  diagnosis  im  just  very confused i  have  symptoms  for both fibro and RA and she said i might have  both that  why  i  wondered  if anyone else has  both and how they distinguish between the two im seeing my gp  moz have listed all my symptoms including lots of  stuff i thought  was unrelated  but  does  fit fibro my consutant  changed the diagnosis based on a pain point in my chest that hurt when she  lent on it and  she  said  i told her i dont swell i actually told her i dont swell as  bad as ive seen  but i  used to work in post office  and seen sever disfigurement in some elderly hands i just meant mine  arnt as  bad  as that . when i look at  symptoms i can see alot of  fibro  symptoms that fit me  and i aso see alot of RA what worries me is  she  has  said i might have  both but she is only treating the  fibro. i think i  also  am  not  confident in her  as i need  evidence of  my illness for  the council as im on housing list  and  she  point  blank  refused  saying lots of  people  with fibro are waiting for  housing i got  upset  then  cos i wasnt asking to jump up the list  just  for  her  to give them the evidence they need i think this attitude as  much as anything else has made me question her care

She should be sending reports of your meetings back to your GP (oddly enough patients don't get a copy of these) I've seen them for any sort of treatment change, but it usually takes about two weeks to report back to to gp I'd assume less than a month if there's a prescription you need to reorder through GP.  You could chase GP see if she's corresponded with them and request copy, or call consultants secretary and ask for copy.  I know I sound pushy in my advice but there is tremendous  pressure on services for health and housing and you will unfortunately have to push and push.  Why she would get sh*tty about confirming a disease you are suffering from to help with social housing I'll never know surely she can understand that housing you perhaps in a ground floor flat, or a unhilly area might help with things like fibro or RA? What if you needed proof to employers for sick pay etc.  Also on a more synical note your better of getting RA than fibro on your notes, it has a known cause, no cure but well established treatments, fibro does not have this status yet and is very new and not well known. 

I did write a rather big reply but for some reason it's being moderated in a nut she'll she will have communicated any diagnosis to your GP (though this may take her a few weeks) you can ask your GP for any copies of communication this will include your prescriptions and your housing help your better off with an RA diagnosis 

yes  i  understand  that  RA is better  for  housing  which is part of  problem if  she  says its  fibro no RA i could actually lose my place on housing list while she refuses to acknowledge th RA which she says i dont have cos i dont swell i question this  for many reasons eg i saw a podiastrist to get help with my feet  but  when i went my feet  were  so  swollen she asked me to come back in jan  when  she  thinks  my RA meds (that im not getting !!!) would have kicked in and she will be able  to examine my feet properly  how  can one  person say my  feet are  so swollen she dare  not touch them through fear of causing pain  yet  another say i dont swell just  cos i said  i dont swell as bad  as the old  ladies ive seen in post office

mean time im sleeping on my ex boyfriends sofa until i get housed and  that cant be good for  either condition

Oh bless you, she's really screwed things up for you hasn't she!? Can you take photos of the inflammation before and after shots and possibly get your podiatrist to report on the state of your feet to her, trouble is whenever I get my joint pain or when they properly swell I'm not actually due to see anyone so that's what I'm planning on doing, before and after shots god I'm desperate lol

im not  due to see podiatrist again till end of january  but funny u mention it  i started taking  photos 3 days ago  and  yes  her timing  sucks a bit !!! but  if  she is right i should be grateful to get  right diagnosis  but i just  feel  she determined to prove i havent got RA just read an article about  diagnosing RA she said MRI scan on feet will be definative arthritis research says mri scans are being monitored at the moment to see if they are an effective tool so why does she  think its  definative  also  in my  search for answers ive now seen  a survey carried out on people with RA vs people with FM and people with both ....it  seems if u have  both then its a happy  coincidence that  the FM helps prevent joint damage which is great news  however if i have both the mri on feet  prob wont  show joint damage so wont help !!! i give  up

Thats ridiculous so she's basically saying "I'm going to wait for the damage to appear, then treat you"  what about the pain and the immobility it causes before that? I think it boils down to the RA being sero negative which 50% of early RA is, think it goes 25% after few years.  Wonder if MRI is best for showing inflammation? And could she prescribe something that covers both problems.  A lot if people with suspected auto immune disease but no diagnosis trial a low dose steroid to see if it kicks it into remission.  I'm just parroting all that I've read, a lot of them end up being treated by the GP because the consultant sits on the fence

ive  just  got off the  phone to NRAS helpline she  said  i need to get an appointment  with  consultant  who originally diagnosed RA and ask his opinion on his diagnoses being over ruled  after  so long

she also said MRI is  not definative way  of diagnosing RA that i possibley have both RA and FM 17% do have both and confirmed if i do  then mri  is useless as fibro somehow protects RA causing joint damage so  it  wont show up

and i  should  report  the  new consultant to PAL because  of  her attitude

ive  just  got off the  phone to NRAS helpline she  said  i need to get an appointment  with  consultant  who originally diagnosed RA and ask his opinion on his diagnoses being over ruled  after  so long

she also said MRI is  not definative way  of diagnosing RA that i possibley have both RA and FM 17% do have both and confirmed if i do  then mri  is useless as fibro somehow protects RA causing joint damage so  it  wont show up

and i  should  report  the  new consultant to PAL because  of  her attitude

ive  just  got off the  phone to NRAS helpline she  said  i need to get an appointment  with  consultant  who originally diagnosed RA and ask his opinion on his diagnoses being over ruled  after  so long

she also said MRI is  not definative way  of diagnosing RA that i possibley have both RA and FM 17% do have both and confirmed if i do  then mri  is useless as fibro somehow protects RA causing joint damage so  it  wont show up

and i  should  report  the  new consultant to PAL because  of  her attitude

Sorry to but in here mogsey but I've been reading about all the carry on you've been having. You definitely need to make a complaint. I have RA and have been messed around by my GP and now things have got much worse she's panicking and asking for an urgent referral for me. Good luck

thanks  matron i really dont like complaining  everyone  has off  days !!! i have appointment now  to see  my  original cinsutant  although this  isnt  for another 3 months but  hopefully we will get to  the  bottom of it all

thanks  for  your  support good luck with your urgent  refferal seems to me  there isnt any such thing as  urgent in my  area !!!

 

Well mogsey they say urgent but won't hold my breathe!

lol but  feeing  guilty about it  co its  actually  not  funny atall