Doctors appointment tomorrow... apprehensive

Best of luck at your appt. let us know how you make out. Writing things down is a very good idea. I used to make a list of complaints for the same reason- I'd get side tracked and forget to mention things. I'd just hand it to my RD and say- these are some things that are bothering me and he would address them one by one. It was good to be upfront and it was a way to start a conversation. Of course now the list is same old same old and he turned wishy washy so I stopped bringing it out of frustration.

Jay, I go in with dot points. Because often there are too many areas I ant to cover, like symptoms, pain relief, drug interactions, side effects... need I go on.
I didn't like the tramadol either, my doctor is good with that and I've recently gone back on the patches, I find these really good. Takes out a lot of background noise, then I just take oral meds for when I have PT or a big work day. I have a bit of a range of these including endone down to panadeine forte so I tailor make my pain relief accordingly.
I think from talking to people who are n chronic pain, tramadol works well with muscle relaxers. Anyway, good luck, write that list. Admit you have a lot on your mind you want to cover from the start and go for it.
Thinking of you, golitho

Mel, have you recently been diagnosed with RA? If so, my condolences!

Got back from seeing my doctor today, he has decided that my back pain is physical/mechanical (in spite of Xrays and MRI scans saying otherwise) and has referred me to muscle/skeletal "people" which is basically just a small room in my local physical therapy dept. He dismissed all my other aches, pains, anxiety, etc as being either due to tramadol, MTX or just plain "in my head".

So yeah, useless. He told me I should wean off tramadol, but wasn't willing to replace it with anything.

I had a long (45min+) chat with an unnamed Rheumy at an unnamed hospital today, very much off the record, and the long story short is that if I was his patient, he'd happily prescribe Oxycodone/Oxycontin/Fentanyl etc, and says it sounds to him very much like I have Fibromyalgia. I was also told that a GP/Family doctor would never make such a diagnosis, and that my Rheumy will probably ignore me, given they're PsA/Anti-TNF specialists and researchers - even if I get a Fibro DX, I won't get proper treatment.

I told him I was truly at my wits end with it, and was going to start self-medicating with something like gabapentin. He said he could not possibly comment on it, smiled, and suggested Lyrica at 150mg, and warned me against gabapentin. Apparently, Lyrica is "cleaner".

After my doctors appointment, I was really worked up that still nothing is being done that will lead to any effective treatment. Just repeating tests I've had again and again. I feel so much better after this chat though, I feel like at least I'm not going insane. Some doctors have this shamanistic ritual in which they are the healer and we are subservient, and they're afraid of being questioned, or of a patient who wishes to take charge of their own treatment. I will see my own Rheumy on wednesday, if I don't get a stronger opiate AND Lyrica, I change Rheumy, and import some Lyrica from India. Based on his opinion, I believe firmly that I have fibromyalgia.

My GP also refused to give me any sleeping pills because he says they're too addictive. I believe it shouldn't be his choice to make, but mine. A risk of addiction would be worth a nights sleep for a change, I only wanted them for times when I have something important the following day. Not to worry, India awaits.

Take care every body,

P.S.

Any one who was following the saga with my sister - it looks like she will ultimately get the anti-TNF therapy, but it could take a couple more months of red tape/bureaucracy. I didn't realise how hard it is to get hold of in England, I only have it due to being on a trial.

If your hip ain't falling off, you ain't getting no Humira!

oh the joys of anticipating a dr. visit- hoping that we will get answers to our questions, have our fears quieted, find solutions to our problems...only to feel blown off, have new questions and start second guessing ourselves...

Sorry it was a crappy appointment Jay.

Have you ever tried benedryl as a sleep aid? 2 makes me sleep like a baby.

All the best to your sister- sounds like a TNF may be in the near future- way to go!

Why are they so blinkered? What are they scared of? Don't you fit the trial criteria if you have fibro as well? Do you mess up their outcomes or something? Why no fentenyl? It is so good for that background pain for me or was now I'm on the other patch. I've even been on oxyconton but wouldn't be able to drive or work on it so only good for flare times for me, but it does let me sleep!

As for your sister I know here in OZ you have to fail 3 DMARDS before they will let you try a TNF inhibitor. Lots of red tape because of the expense and it gets hairy if you fail a TNF like I did. I know my rheumy couldn't put it down as a fail because I also found remicade useless, that would have disqualified me from any biological treatment for 2 years. So there are some very bizarre rules out there to make it hard to get these expensive wonder drugs...

How frustrating for you, lets hope wed goes better, golitho

Thanks, Weary. Is benadryl diphenhydramine? I think it is. I know it as Nytol, and even 3 tablets doesn't touch me. I take it to potentiate tramadol though, given the doctors here are reluctant to prescribe effective medications... However to my surprise Hydroxyzine did help sleeping and anxiety a little, though nothing like a Z-drug or a diazepam would.

mama, I can try to get referred to the rheumy I saw, but I'll be fighting red tape all the way I'm sure. I have the advantage of having my own house in one county and my parents in another, which effectively doubles the number of hospitals I'm allowed to visit. (It's a 'post-code lottery', or so the papers have branded it)

Lyrica is available, but many doctors just won't DX fibromyalgia. I was told my clinic won't (off the record) because their research interests are in biologics... It is about $16 for 10 tablets if I were to import them. What dose are people taking? I was thinking 150mg each morning..

golith - The trial finished 3 weeks ago, so I don't actually know how long I'll be seeing the trial doctors! They'll stick around till the trial participants are 'stable', then i'll "reintegrate" back into standard (sub-standard) health care.

The requirements here for Anti-TNF is at least 3 swollen joints (with a significant level of fluid, any old swelling won't do) and to have tried and failed on 2 DMARDS. (Technically the license for TNF-blockers states 4, but they don't pay attention to this)

SyndeyJo - It seems to me that many health care professions (doctors, nurses) seem to be very reluctant to embrace a patient who actively asks questions, especially when the questions actually require a degree of knowledge or might require them to look something up (i.e. the "Number needed to harm" vs "Number needed to treat" is something I try to find out on new treatments

It's almost as if they're afraid that the patient will intrude on their egotistical, shamanistic ritual, in which they are the healer, and we are the subservient to be healed! I guess this is just the more insecure, or pompous doctors. The rheumy I saw yesterday was nothing like this, and engaged me about the various issues we were discussing on a plane-level.

If I mention X study to a doctor normally, they dismiss the "research" as being unrealistic, without even listening to what "research" I'm pointing too...... some family doctors are too far removed from the scientific model that they genuinely become inclined to believe they're a great healer, and not merely a mediator of medication.

And Jo, I think you may have meant Rapport, at least, that's the English spelling. The Ts are silent because it is french derived, and means rapporter - " to bring back". (A reporter "brings back" news) I think in your sense it comes from the idea that someone in rapport will "bring back" idiosyncrasies in the conversation from the other person, mirror posture, induce more back-channel behavior, etc.... sorry for the etymology lesson, it's a geeky hobby of mine, hah.

Take care everyone, thank you.

James

Thanks for your post mel,

Tomorrow, I'm going armed with PDFs from the British Pain Society, treatment guides, drug studies, lists of side effects, pain logs, and with the fact that another Rheumatologist believes I have it. I'm going to tell the doctor I want him to perform the point test to satisfy himself, and tell him i'd like Lyrica, and then whatever opioid therapy he thinks most appropriate (I.e. OxyContin, Fentanyl - or just Oxycodone for breakthrough pain.

If he doesn't agree, I'll probably cry and begin to self-medicate. Lyrica isn't controlled so it is perfectly legal (yet expensive, Looking at $100 USD per month, imported). As for pain relief........ I don't know what I do (and if I did, I probably couldn't say without breaking forum rules!)

A short term course of diazepam would do wonders for me at the moment, Mel. I'm probably going to let my GP run his million-and-one blood tests on me, just because it probably won't hurt to have a different lab check me for once, and then I'll tell him I'm no longer interested in receiving treatment from him.

Thanks

James

....Watch this space in 24 hours.....

P.S.

Mel, regarding your L plates - you're doing the right thing learning as much as you can. When I was first diagnosed, I was seen by a Professor Paul Emery www.leeds.ac.uk/CAREIV/Biosketches/Paul Emery.htm, a pretty eminent Rheumy (I'm told). He said to me that the best way to fight this disease is knowledge, and that I should learn all that I can about it, and its treatments. Incidentally, he was the only Rheumatologist I've seen (out of 7, or so) who genuinely seemed to understand how it feels, and made a good attempt at explaining it - i.e. he was acutely aware of the lethargy and malaise caused "I know, it makes you feel like s**t, doesn't it?", unlike others, who are happy to ignore you providing you're not swollen to twice your size.

x

Hey, James... I'm hanging out to find out what happened at your appointment...

Yeah James what happened on Wednesday? Hanging out to know the outcome? golitho

Hi Everyone!

Sorry about the delay, my Rheumy is in another county and my house over that way has no working internet connection, so I've been unable to use the internet until now! (Internet withdrawal makes Opiates seem trivial...) Oh, I also went to se Guns n' Roses last night...... serious back pain from standing up for so long!

After being dismissed by my doctor last monday, I went to see MY Rheumy for the last of my clinical-trial appointments, meaning I'm back on standard government healthcare as of now. (Meaning I can be seen only every 3 months and not monthly... without choice in doctor)

After explaining everything, the doctor acknowledged that it does indeed sound like Fibromyalgia, especially given the number of tender points. He said he would not prescribe Lyrica or Gabapentin without trialling other medications first. (After all, there's no generic for Lyrica, which basically means it is unavailable in UK) - I have been prescribed 25mg Amitriptyline (Elavil, Laroxyl...) to be taken once at night.

The packaging states I cannot drink Alcohol with it, however my Rheumy said it would actually improve it's effectiveness! (and told me to be within 10ft of a bed if I do choose to drink on it), so it has helped with fatigue/insomnia over the last two days, pain subjectively seems more mild, but it is definitely too early to tell. I'll still be pressurizing for better medications next time I see my doctor (NOVEMBER!). I'm also ordering some valium (Diazepam) (OTR) to control muscle spasms and occasional sleeping difficulties.

Sorry if I haven't replied to any posts I was involved in recently! I hope everyone is OK, and ideally, better than OK.

much love!

P.S.

My PDR (physician's desktop reference) and a med school crash course in Rheumatology textbook arrived from Amazon today :) so I will definitely be armed with new vocabulary by november!

Hey,

England's NHS certainly is interesting. A doctor will refer you (at his discretion) to a specialist of your choice... providing it is in the same county (A county is MUCH smaller than a US/Aussie state - so it is not unrealistic to wish to see a specialist outside of your local area). The waiting list to actually get an appointment, is long. Physical Therapy in my home county has a 10 week wait for an appointment, Rheumatology I believe is around the 8 week mark. There are no medical/surgery fees whatsoever in England except for prescriptions, which are about $10 USD for one months supply of any medication (whether it's worth 50c or $3000). Even gender reassignment surgery, and weight loss surgery, can be free providing the doctor agrees it is helpful to the persons health. Even abortions are free! I use "free" loosely, because we're hit HARD with tax. 20% VAT, 20-40% Income Tax, along with "National Insurance", a fee dependent on what you earn.

So yeah, on the plus side - healthcare for everyone, on the negative - a low standard of healthcare mostly, and a difficulty getting the best treatments. Brand name drugs are basically unheard of, everything on the NHS is generic, or as rare as gold dust.

It is very frustrating that we can't "figure it out together", especially when I am quite well read in immunology etc and am capable of forming my own conclusions. (I studied experimental HIV vaccine synthesis and Cancer drug delivery systems for my engineering degree)
... it is interesting that I saw 4 doctors, and received 4 different diagnoses, and the correct one took 5 months to find. ESPECIALLY considering I had self-diagnosed fibromyalgia after my first blood panel...

I'm not looking forward to 3 month gaps between appointments now, I mean - normally I'd see my rheumy again next month, and I could up/change my meds, but now I have to wait 3 months before I can say, up my Amiltrip', then another three months until I can try Gabapentin, then it'll be another 3 months while I try them both together, then another 3 months will pass before I finally get Lyrica.

I'm going to buy a 2 week supply of Lyrica myself, and try it out. If it helps, I'll tell my doctor (and probably get a shouting at) and ask for a script, if it works, I don't think he can argue!

Thanks for the concern, ciao

Jay,
I was going to posts, but......I'm shocked that a
Doctor can dx you with fibro but not give you the Lyrica to at
least try...So I can only tell ya that I had a bad reaction to Lyrica...
It (Lyrica) made me throw up every hour on the hour for over 12
hours and I almosted ended up in the er, Other's say it helps but
soon they need more and more of it as it gets built up in your
body...other than that, if you want to try it then I hope it can help.
They also are using Cymbalta for fibro and there is a link with Vitamin D
defencicy (SP?) which I'm very low on D, but you probably know all that...
Good Luck on the Lyrica...you should be allowed to at least try it to see if it can work for you...
(I know that for the first 15 minutes that I could keep it down that it was helping, but
then all heck broke loose...)
((((((((((((((((((((((((((((((((((Jay)))))))))))))))))))))))))))))))))
Healing HUGZ, sorry about the typos.........