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February 17, 2011 / zzirf

Farewell and Good Luck

I pinned my hope on this rheumatologist and after three visits he is saying farewell and good luck.  I knew he was going to be of little use to me when the words “graded aerobic exercise” came out of his mouth today.  It seemed to matter little that I relapsed this week because I went for a walk  nor that I had joined the gym not too long ago but had to give it up because  it pushed my body into repeated crashes.  He just quoted what I know to be the ‘Weasley’ approach to CFS.  That approach has actually caused deaths.  This man is supposed to be “THE” most respected  fibromyalgia expert in my area and yet he has never even heard of XMRV and his idea of chronic fatigue syndrome is just plain old ‘fatigue’ with no immune system involvement.  I told him that I relapse when I am exposed to a virus but he says that it was an assumption on my part that I have any immune system involvement even if I do feel like I have the flu for months after.  He also says that Myalgic Encaphalomyelitis is an outdated term which does not reflect the true nature of the syndrome.  The W.H.O. classifies M.E as a neurological disease but he does believe in it and he cannot explain my dizziness and balance problems and light-headedness.  My neck x-rays showing narrowing of the cervical foramina and the bone spurs causing it in his mind are not bad enough to consider any nerve compression as a cause of the dizziness.   But at the same time, he marvels at my lack of heel reflex which surely is a neurological sign.  It seems I will have to go to a neurologist and that means going back to my G.P.  And if it is a cardiovascular problem then I will have to get referred to a cardiologist.  He made no comment at all about the pain in my ear to eye to teeth and maybe now my right lower jaw that I possibly have been mistaking as gland pain.  That pain is probably the most likely thing to have me reaching for the codeine and for years I have been sent from dentist back to doctor trying to determine what it is.  I have had it really badly for the last month or so yet I have no sinusitis.  I am pretty darn sure it is nerve pain – another neurological thing.

Initially all I really wanted was some pain relief for my neck and shoulders because it gets as bad as the ear-eye-teeth pain sometimes but I have not been prescribed any strong pain killers that I can take on an as need basis – instead he wanted me to try Lyrica which meant taking it continually.

Lyrica is an anti-epileptic drug approved for use in fibromyalgia and it is not available on the NHS or PBS so it was going to cost quite a bit and at least he gave me some samples.  I had a horrible week with the side effects from that and then quit taking it.  I could not walk steadily or pass the Tandem Romberg balance test while on it.

Next visit, he decides to try me on Prednisolone and a NSAID for a week each.  My response to the Prednisolone was fantastic, not only for the pain but for my brain fog and fatigue as well which he says may well indicate some autoimmune disease in me (like Crohn’s for instance which I was diagnosed with many years ago but most now consider that it is not likely because of my colonoscopies that were clear).  The Ponstan used as an anti-inflammatory only reduced my pain 20% and because of my gut problems I cannot take that either so from that he concludes that I have not got much inflammation going on.  His verdict:  I probably have some pain caused by mechanical problems of the spine, some pain caused by fibromyalgia and some pain caused by an autoimmune response.

So am I going to get a pain killer yet?  No.

Instead he gives me a prescription for an anti-malarial which I have to take for 3 months before I even know if it is going to be of any use.  It is often prescribed for people with Lupus he said.  Naturally it can have many side effects too.

So what is it with my doctors and pain killers?  If I was a man with a back problem I would be on oxycodone or something.  I see it all the time.  I have had structural problems with my back for years and he knows of the pain in my back and the scoliosis.  I just don’t get it why doctors want to put you on a drug to relieve pain in a roundabout sort of way which requires that you have to take something continously that can have severe side effects and yet something like  Tramadol which is reported to be good for fibromyalgia pain and can be taken on a one-off basis has not even been offered to me.  He did not let me try LDN either because he said he wanted me to try the Plaquenil.

I have one more blood test to do in relation to vitamin D because of the bone thinning I have but I do not have a return appointment to the rheumatologist, instead he just said good bye and good luck and that he would be sending his report to my G.P.

So here I am, in pain daily, sometimes unable to think straight, barely able to keep a house, now unlikely to get from him any validation of my disability in the hopes that I could apply for some subsidised home help.  My G.P. said that she would not apply until after I had seen the rheumatologist report and was hesitant even then.

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3 Comments

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  1. CFS Facts / Feb 24 2011 1:44 AM

    Took me 7 years from first request to finally getting pain pills. Good luck!
    I finally got upgraded to Vicodin after I got Vicodin following a tooth extraction and was able to tell my doctor how well I slept, how good I felt, while taking it. Got any teeth that should come out?

    • zzirf / Apr 26 2011 10:04 AM

      I finally got some Tramadol. It does work well during the day. Find it has a tendancy to keep me awake at night time though so have to avoid it later in the day.

  2. Helen / Feb 25 2011 6:57 PM

    Sounds so familiar. I brought my rheumatologist the Science (WPI) and Lo/Alter (NIH) studies. All printed with the credentials on top. He told me not to believe everything I read in womens magazines, medical sexism.

    I am fortunate to get Tramadol here in Ireland and its not that expensive. I use the 150 mg slow release tablet which is sold here as Zydol. I just hope I don’t get used to it and for it not to work so well. It’s been a lifesaver. While it doesn’t kill the pain outright it keeps me functioning. Holding on for better times. Bless you.

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