50/50 it seems!

Hi everyone - I hope everyone isn't in too much pain :)

I saw two doctors today, my family doctor, and a rheumatologist (but not mine, and he cannot treat me),

The family doctor dismissed my symptoms as being due to Methotrexate, Tramadol, or plainly in my head. He said the back-pain I describe is unrelated, and I must have banged it without noticing. This is despite MRIs and Xrays of my back showing it to be 100% normal. I have been referred to physical therapy (which will be useless, no doubt) for lower back pain. This is the third physical therapist I am going to have to ignore.

The rheumatologist told me it sounds very much like Fibromyalgia, and (very much OTR) he suggested Lyrica, along with ceasing Tramadol, and taking either Oxycontin or Fentanyl, until I'm under control. Admittedly, he couldn't see my entire Medical history, but he knew my diagnosis, current meds, and that all the bloods and scans I've had are well within the normal ranges for a healthy person, without exception.

I see MY rheumatologist on wednesday - he, so far, is ignoring all symptoms and refusing to give me anything other than lots and lots of Tramadol.

I firmly believe now that I do in fact have Fibromyalgia, I could publish the diagnostic check-box as an auto-biography. Just have to wait for my doctors to catch up, eh? The doc that told me it sounds like I have it, told me that a family doctor will never find it, and will rule everything else out 3 times over before it gets considered. He also told me my clinic will probably not treat Fibro properly, based on his experience working there in the past....

so yeah, I'm venting slightly, but ANY advice would be appreciated. I feel so much better for having spoken to a good doctor finally though, with not being his patient, I felt like what I was being told was very much unbiased by national targets and finance. I'm also surprised he took the time to stop and chat with me for 45 minutes when I'm not his patient, or even registered as a patient in that county! I basically stopped him on his rounds on a ward in the hospital, and engaged him in conversation, lol.

Love to all,

James

James, it's horrible that we have to go through these insults to our intelligence.  When they can't find a scientific reason for our pain, then it must be in  our heads.  God forbid they look around for other causes.  I'm glad that some doctors are actively studying this illness.  Maybe they'll figure this out soon. 

 

Read posts and Fibro 101 and you will see what has been helping all of us.  You just have to keep searching to find what will help you be in control of the pain.  You won't be pain-free but you can get in control of it and lead a full and enjoyable life.  Keep moving and never give up!  We are here to help you.

 

By the way, have you tried keeping a log and showing your levels of pain when doing daily activities?  In Fibro 101 there are links to a log and also to sites that help you describe your pain.  Use these and take this into doctors appointments.  This helps them understand what you are going through and you might be able to get better help this way, too. 

 

Sherrine

Is there a reason you are going to that specific clinic?

Can you change clinics?

Do you have a significant other you can bring with you? Parent? Someone else?

I ask that because sometimes it is better to have that third party with you. You have backup to what your saying and asking and it is another pair of ears in the process. Tell them that they can consider this person as your caregiver when you need them and sign whatever paperwork is needed for that doctors office.

I've learned to fax ahead of my appointment. Maybe get a list going? Then there is NO mistake why you are there. Bring a copy of your list with you so that when they ask why you are there you can say.. To go over this list that I faxed the other day.

Request that the primary do the pressure points.. Bring the directions from the internet if he/she doesn't know how.
Sorry but every dimwit Primary should know how to do this test. I'm sure there is a link to it in the 101 post.

You've seen this Rhuemie that you are going to on Weds before? What was their excuse for not doing the points test?

I actually brought a picture of the front and back of a human body to my doctor appointment and used a highlighter to emphasis where the pain is.. A pink highlighter meant it hurt like hell! Blue was med.. and yellow was it's getting there..

Most of all.. Look at the treatments for Fibro and try to decide which you would like to try..
Lyrica, Savella, Cymbalta, LDN, Natural.. Go armed and ready and informed!!

Thanks for the replies everybody :)

I can potentially switch, but it is difficult to do so, it would have to be agreed by my family doctor, and the new Rheumy, and then I'd have to join a waiting list. The reason for being at my current clinic is that it's a world leading centre in Psoriatic Arthritis and Biologics, and I've been on a 12-month clinical trial there, meaning I've been receiving substantially better than "base-line" health care for England (Which, if you don't know, is about as advanced as Soviet Russia in the 50s.)

I will see him tomorrow, and take with me the pressure point diagram, all my symptoms written down, and a diagram of my pain (Thanks SillyMe2!), and see what he says. I'm going to ask for Lyrica, and to switch to either Oxycodone for breakthrough pain, or Oxycontin, or a Fentanyl patch. If he doesn't at the very least give me a very good explanation why he doesn't think this should be the case, I'll do my best to leave the clinic!

Basically, my Rheumy clinic is so preoccupied with treatments, and research, that the patients specific needs and PALLIATIVE care, takes a back-bench. I can have MRIs, XRays, and Ultrasounds at the drop of a hat, but as soon as I need a pain-killer - or have a disease which doesn't suit their research interests - nothThaing. I was lied to, and told he couldn't prescribe Fentanyl without special dispensation, the "other" Rheumy told me that this is not the case, and it can be dispensed from a hospital pharmacy without any additional paperwork.

about Pain Logs: I tried to keep one for about 15 minutes, I'd filled a page with maybe 8 different pains, all coming and going and lasting for various amounts of minutes at a time. I also went all yesterday morning without Tramadol, so the doctor would see me in a more natural state...... OUCH.

Thanks again everyone x

You very welcome James and hope it works. Sometimes I have to back up and remember that different people think differently. Some pay attention to voice, Some with written text, and Some with Pictures.. On top of that you always have those that need two or more to actually "get" what they are being told. If they are continually ignoring what I'm saying using different techniques. I label them as egotistical idiots!!