rheumatoid arthritis 1 year ago but due to other health issues im unable to take any of the meds designed to slow down the progression of the desease
Last week my rheumatologist consultant changed and the new one asked if i wake up refreshed in the morning i answered no i dont (i sleep on a friends sofa so who would !!) she then asked if my joints swell i said a little but not to bad (i mean ive seen alot worse in others) based on these two answers she change my diagnosis froM RA to FM when she showed me all the info on FM i agreed that alot of symptoms i have fitted FM but many were more consistant with RA after a discussion she conseeded that i may have both and i now have to wait 3 months for a mri on my feet to confirm wether i have RA or not but she says i defo have FM and might have both tho she seemed doubtful and MRI is to "prove she is right" my worry is after a year of no meds for RA my previous consultant thought he may have found a way round it and i had some test the results of which were supposed to be discussed last week and me finally get some treatment but never game up with the new consultant
So now she has changed my diagnosis im worried that i may have both and the RA treatment is being delayed yet again
does anyone else have both RA and FM and if so can u help by explaining the difference in the pain and where it is to me
Hello mogsey. What an impossible situation to be in. I think this can only be answered by a health professional. I do think however you do have RA ànd you should ask for the appropriate treatment. I have discovered there is too much time wasted before a diagnosis is made and before treatment begins. Ask for a second opinion
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
Hiya mogsey,
My friend has fibro it's an illness that throws of a lot of symptoms that crop up with auto immune diseases like RA, fatigue, joint pain etc. But from what I've gathered it doesn't cause progressive damage to joints. There are also about 15 "pain points" if you web search "pain points of fibromyalgia" it should come up with a picture of these. You might have noticed your doc pressing on these areas? Your consultant can also check you for antibodies associated with RA, rheumatoid factor, CSS. Not aware of any for fibro but my friend finds top grade vitamins, descent massage and hot baths help a little
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
Also IBS, chest pain, insomnia( caused by muscle spasms when resting) she doesn't get swelling But she's currently unsatisfied with the treatment available for fibro and is going to see a rheumatologist who specialises in fibro, the current treatments she's been offered are just antispasmodicand very strong opiated based painkillers the sort of stuff that would knock her out for the day.
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