Hi everyone,
im going to apologise upfront just in case this either turns out very long, very boring or very confusing! before my fibro diagnosis i had been going to the doctor who was ruling things out and saying she thought i could have cfs. All the tests came back negative so she said the final one she was waiting for was expected also to be negative, so i was on my way to getting the diagnosis. As soon as i had my diagnosis she would send the paperwork in with a referral to the cfs clinic and it wouldnt be long to wait(this was in september) shortly after, i was admitted to hospital in severe pain where i met a rhumatologist who diagnosed the fibro. he also ran bloods to check my thyroid as it was overactive the month before and has said its spontanious recovery so i could forget about it. before being discharged he said i would get a refferal to the pain clinic, an adult OT and a physio but that was in october and still up to now i havent heard anything so i got the gp's secretaries to chase it all up for me. while on the phone anyway i asked where the referral was for the cfs clinic. she got all confused because i was asking about quite a few refferals from various people and she didnt know who should be doing what. ive ended up trying to chase things, it turned out that the referals from the hospital never went through because it was signed off from a consultant from renal, even tho i didnt see any renal consultant,the rhum didnt sign it because he wasnt on the ward at the time?! anyway to cut a long story short (well shorter anyhow) i finally managed to get the hospital to dig out my notes and they saw the referrals so i think their now going to get them moving for the pain clinic and physio. The OT i ended up ring ss to find me, they finally saw me on a list that wasnt even looked at when i was dicharged so that now should be going through. now the confusing part. i am 99.9% sure that i have cfs as well as the fibro as i keep reserarching it and i fit into the condition almost perfectly. i spoke to the gp about getting that origanal refferal to the cfs clinic and was told that it hadnt even been sent as theyd already been told that i had the refferal to the pain clinic anyway and an ot for assessment. she seems to think now fibro has been diagnosed and these referrals have been sent thats all shes going to do about it but i think really i should be seen at the cfs clinic as they explained that it was like an umbrella care where they have physios, doctors, ot's, they do hydrotherapy as well as acupunture.
how do i get them to see that while theyve not seen me since november it wasnt through feeling better it was me trying my best to wait it out for these refferals and i know that fibro and cfs are very simular in a lot of ways but i think i have both!!! i had a painful and quiet christmas but been on a lot of painkillers which made me sleepy.
if youve managed to read all of this without falling asleep then i want to say thankyou xxx