Shocked and appalled

During my appointment with him Saturday (finally!), my rheumatologist reviewed the results of the blood test I had done back in early April. It was full of good news, he said, smiling.

I ratcheted my dropped jaw closed. I’d been certain that this blood test was not going to show anything good, given how much constant pain I’ve been in since my last rheumatology appointment in January.

Everything looked just fabulous, said Dr. McA. My sed rate was normal. Liver enzymes were lovely. As the latest part of a trend stretching out to about 18 months, he said it appears that my RA is actually in drug-induced remission. “The meds are doing exactly what we hoped they’d do and you’re tolerating them well,” he said, still smiling.

“But …”

“Now, it’s clear that your trochanteric bursitis is not improving,” he went on. “After several sessions of PT and several rounds of steroid injections, oral and dermal steroids, you’re still experiencing frequent pain. So I’m referring you back again to the orthopedic surgeon to explore possibly draining the bursae or removing them entirely.”

I sighed. Bursitis-wise, it has finally come down to surgery or resigning myself to living with the pain. Neither prospect feels very positive to me, but eventually I’ll need to choose. In the meantime, I remain hopeful that the damned bursitis will just go away on its own if I’m a very, very good girl.

The doctor turned away from the computer screen and gazed at me. “You have questions.” He darted a glance at the small notebook I’d laid on the corner of his desk.

I nodded and told him about the slowly increasing, constant pain I’ve felt in my hands and wrists. I told him about that bone-ache in my legs, which usually happens at night and is a comparatively new symptom in my long experience with the rheuma-dragon. I wondered if the Fosamax I’m taking for osteoporosis might be causing it.

He asked how I was sleeping. Not great, I admitted, but that was because I ran out of nortriptyline again. He promised me he’d remedy that. Then he looked carefully at my hands. He checked the range of motion in my various joints. It’s very good. He noted that I have no swelling. No deformities. I present with a body that backs up my blood test results. “Your RA really is in clinical remission,” he said again.

I managed to breathe back the sudden tears that pricked my eyes. I hate to cry. That really is all good, I said after a moment. Please don’t get me wrong. But my hands hurt literally all the time. My knees now join the chorus more and more frequently. The pain feels like rheuma pain, the kind that leaves me anticipating more and worse pain at any moment. It’s distressing and scary.

And what’s with this nasty ache in my leg-bones? “If I’m in remission,” I asked quietly, “where’s all this pain coming from?

Dr. McA started pressing various places on my body and limbs. Ouch—elbows were ultra-tender. So were my knees. There was slight discomfort in the other places he pressed on, but nothing worth getting excited over.

I have WHAT?!

“You have fibromyalgia syndrome,” he said in answer to my question. “Your symptoms are classic.”

My jaw dropped. The tears rose into my eyes again.

I’ll be honest, here. This concept just staggers me. It makes me want to find a cave I can crawl into and die. Worst of all, it embarrasses me. I know I shouldn’t feel this way, but the fact is that there’s a considerable portion (more than half, depending on which source you look at) of the professional medical community that dismisses fibromyalgia as a fantasy condition. These doctors and medical researchers believe that some hapless physicians, looking to offer some sort of diagnosis for their patient’s clinically baseless but persistently whiney complaints of pain, fatigue, insomnia, bowel problems, brain-fog and other various etceteras, just tossed all these phantom symptoms into a bag and made up an important-sounding name for them to satisfy their nutcase patients that they actually had something wrong with them without calling it what they really believed it was: hypochondria or plain, old-fashioned malingering.

This pain I’m experiencing isn’t my imagination. I’m not looking for attention or for an excuse not to work. I’m not drug-seeking. I’m not a shameful malingerer or a bloody hypochondriac. Not only that, I’m quite aware that there are many autoimmune arthritis sufferers who have also been diagnosed with fibromyalgia, and the pain and other symptoms they experience are no less real than my own.

Finally, I’m aware of the other half of the medical community that believes FMS is a credible diagnosis. The American College of Rheumatology is among the most prominent.

And yet … and yet.

“Fibromyalgia syndrome.” Wikipedia defines it thus: “From the new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; the term literally means “muscle and connective tissue pain.” The syndrome’s symptoms run the gamut from soft tissue pain, joint stiffness and painful tingling to intractable fatigue, chronic insomnia and brain-fog, among others.

“You’re experiencing soft-tissue pain, Wren,” said Dr. McA gently. “You have no swelling. No permanent disability and no deformities from your RA. Clinically, you’re in terrific shape right now. But you still hurt, sometimes very badly.”

He went on to suggest I look into gentle-resistance water exercise at a local warm-therapy pool. I didn’t tell him, but I’ve looked into that already. There’s only one pool like that in the Sacramento area (funded by Easter Seals) and it’s about 25 miles from Mom’s place and more like 50 from my home in the mountains. Either way, going to water exercise classes a couple of times of week sounds both expensive in terms of gas (in California, gas still costs anywhere from $4 to 4.50 per gallon) and time, considering our increasing traffic gridlock at all hours of the day.

So I guess I’ll just continue doing my bursitis exercises and try going back to the recumbent bike and doing low-weight resistance, slow repetition exercises at the gym. I ordered a Rodney Yee beginners yoga CD yesterday. (At least it will be fun to try and to watch. Wow, is that guy fit!) Everything I’ve read about fibromyalgia so far stresses gentle, daily exercise, sound nutrition for healthy weight loss and/or maintenance, and plenty of restful sleep as good, proven ways to treat symptoms. Some of what I’ve read also suggests cognitive therapy and therapy for stress and depression, as there seems to be a psychiatric aspect to the syndrome. I’m not sure what I think of that.

Well, yes I do. I feel humiliated whether I ought to or not. I’m working on that, too.

There’s a big part of me that refuses to believe this diagnosis. My pain isn’t “all over,” as it’s described in the research regarding fibromyalgia. I often don’t sleep well, but that’s more a result of my hip bursitis pain than anything else. And that can be mostly fixed by taking an appropriate dose of nortriptylene—which I do, nightly, as long as I can keep the danged stuff refilled. Dr. McA fixed that problem on Saturday once and for all, and I’m back on a three-month appointment schedule with him now. I’m not particularly fatigued; except for that deep bone pain in my legs and the bursitis, my pain seems isolated to just a few joints (not the tendons and muscles); and unless I’ve had several nights of interrupted sleep, I don’t experience brain-fog.

Further, as I said above, the pain I’m having in my hands, wrists and occasionally, my knees feels exactly like RA. Can I be in clinical remission and still experience rheuma pain? When I went into natural, drug-free remission 12 years ago, I had (with only two or three exceptions over time) no pain or other RA symptoms at all.

Dr. McA also told me Saturday that the x-rays he requested done on my hips show some osteoarthritic erosion of the femoral head on the right side. I am, as you might imagine, completely unsurprised. I’m already aware that I’ve some on-again, off-again osteoarthritis pain (and I guess, slow erosion) in the tiny joints at the tips of my fingers in both hands. That it’s showing up in my hip (and my knees? Hmmm…) seems par. I’m 55 years old. It happens. Our bodies do finally start wearing out; I’m no different than anyone else, that way.

Finally, we’re experiencing a very unseasonable (read freaky) cold front here in California today. The temperature has dropped from a late spring high of 99 degrees Fahrenheit two days ago to a forecast of 66 degrees today. Talk about rollercoasters! The sky is dark gray. It’s been either drizzling or raining since before dawn and will likely continue to do so off and on for the rest of the day. The barometric pressure has been dropping like a rock since late last evening; I spent one of the worst nights I’ve had in quite a while last night, my bursitis hips aching abominably and waking me up over and over again. It drove me out of bed for several hours. I took pain meds that finally eased it enough so I could finally get to sleep. My hands are hurting even more intensely than usual, too. Whatever’s causing that—the RA that’s “in remission,” wear-and-tear osteoarthritis or (sigh) fibromyalgia—it seems that the barometer affects them all. Goody.

I’m trying to wrap my head around this new diagnosis, friends. It frankly appalls me. I don’t want to believe it; I’ve just about decided not to until we see yet another “perfect” set of blood tests in early September when I see my rheumatologist again. And I wonder: What do those of you who’ve also been diagnosed with fibromyalgia think? How do you feel about it? I’d really like to know. Feel free to comment here or email me, please?

The one consistent thing about RA and it’s co-morbidities is that none of them are ever consistent. I feel like I’m caught in a lifelong, slow-motion whirlwind.

 

 

22 thoughts on “Shocked and appalled

  1. I’m so sorry, Wren. I wrote a post quite a while ago about fibromyalgia, but haven’t posted it yet because of the controversy ti will surely provoke. It sits in my draft box until the day I feel up to defending it. Briefly: sometimes a FMS diagnosis is an easy way for doctors to write people off instead of digging deeper and dealing with the problem.

    One of the criteria that doctors sometimes forget is that FMS pain is unexplained. If there is a medical reason for the pain, then you don’t qualify for a FMS dx.

    Bursitis and tendonitis are documented to cause the type of pain (and lack of sleep) seen in fibromyalgia. If you have bilateral bursitis/tendonitis in your hips or knees, that could cause pain in your legs. If you have bursitis/tendonitis in your shoulders or elbows or wrists, that could cause arm pain. You can even have bursitis that makes it hurt to sit down. It is very easy for extensive bursitis/tendonitis to cause pain that looks like fibromyalgia. From what you’ve said about your bursitis, I think that automatically excludes a diagnosis of fibromyalgia.

    Prednisone and cortisone injections to get rid of the inflammation, along with a long course of PT from someone familiar with RA, can help. It’s a horribly long process.

    Many hugs. Hang in there.

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    1. Thanks for commenting, Socks. The more I think about it, the more I think that some of my pain is related to the bursitis, as you say. The rest is still RA. I’ve taken prednisone by mouth and corticosteroids by injection and in skin patches, all to no avail. Looks like surgery is next on the ilst, though I always saw it as a last resort.

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  2. I am sorry to hear that you’ve been dealt another difficult diagnosis. Whether it’s correct or not – I’m sure it’s hard to swallow!
    Like WarmSocks, I also wonder if the lingering pain could be attributed to your bursitis. For example – maybe your hips hurt, so you don’t sleep and when you don’t sleep, your body is ultrasensitive to any other “tissue pain” that may be lingering subclinically (whether from RA, OA or whatever). If it were me, I’d seriously pursue the bursitis.
    Also, if it turns out that the pain doesn’t go away – please don’t be embarrassed by it! Even if it has a psychological component – that doesn’t mean it isn’t *real*. If an antidepressant would help (and I’ve heard they can make a big difference), you shouldn’t worry about what others might think. I take an antidepressant for generalized anxiety disorder and I’m not the least bit ashamed. It helps me function and enjoy life – just like my Enbrel. For me, there’s no difference. Hang in there, Wren!!

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    1. Aw, Mamma, thanks! You’re so right that disturbed sleep only exacerbates existing pain, setting up a vicious cycle. The nortriptyline I take as a sleep aid and mild painkiller is actually an anti-depressant, though I take it in a lower dose than would be theraputic for depression. I’m out of it right now, but my rheumy renewed the prescription so it’ll show up in the mail within the next several days. Sooner the better, as far as I’m concerned.

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  3. Oh hells bells! You are in pain and who really gives two hoots what the diagnosis might be. He/she (the doc) should work on relieving that pain. Oh brother is all I kept muttering while I read your post. Clinical remission..mmmmm…heard that one before and i even had swollen joints at the time and many of them. My two cents…rubbing vigorously to warm you up to this…is that you have ra pain or nerve pain of some sort going on. And I do believe ra can cause nerve pain. And I don’t think your doctor should care what name is given to your pain…fix the damn thing! Or at the very least give you viable options to get relief. Recommending that you swim when it isn’t feasible (did your doc ask if that was doable) isn’t the answer. Is there a pt place that has a pool that maybe you can get in and use? Here in my home town we have YMCA’s that have heated pools. Any close by to you possibly? I am just so sorry that you are not getting the relief that you need. And I am exhausted with the constant batting around of different diagnoses on us patients. Do I care what the name might be? No….I just want relief from what ails me the worst. Fix it! Fix it! Fix it! Using the name game doesn’t cut it in my book. (((HUGS)))

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  4. Poor Wren – yes, I have that diagnosis on top of the RA, and I’ve come to believe in the half of the medical community (growing, I believe) that believes it exists!! I also tend to ignore it most of the time and just tell people I have RA. This can, of course, backfire when you’re having physio and they do ‘soft tissue release’ aka deep massage. Not a problem for the RA – ooooooooooooooooooooooooooweeeeeeee for the fibro! Must post about that some time. 🙂

    Really, all I can say is I really believe it is a credible diagnosis, BUT I completely sympathise and empathise with your shock and disbelief! 😦

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  5. Oh dear, what a horrible appointment. I’m sorry, Wren. I don’t know what I think about fibro as I’ve never researched it properly but I can understand why you are so upset. It sounds a bit dodgy to me, surely the only ‘new’ symptom you have is the pain in your legs, logically this could be caused by the bursitis in your hips (which is caused by the RA). So how does this make all your other symptoms fibro? The wrist knee and hand pain is the same pain you’ve had from RA for years. I don’t really buy what this doctor is saying, it sounds like a bit of a fob off. Have you ever had lots of swelling? The mere absence of it does NOT mean you’re in remission, as you yourself know. And also my blood tests have been completely normal even when ive had swelling so blood tests mean nothing. I’m mad at this guy!!! Sending you warm thoughts.

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  6. Well, I’m not sure what to tell you. I was diagnosed with fibro many years ago before my RA diagnosis. Let me tell you, back then it was really a suspect diagnosis. I assure you it is not a made up condition that someone has because they have emotional problems. I believe it is a real condition simply because when he gave me a script for something to take before I went to bed the pain just disappeared. The medication simply assures that I sleep deeply through the night. Although I never thought I was waking up during the night, I was never getting into a deep sleep state. The medication helps me stay in a deep sleep through the night. I can always tell when I miss a dose because the next day is filled with neck and back pain. The pain from RA is very different from the muscle/soft tissue pain from the fibro. I can definitely tell the difference between the two. Also the fibro pain is generally in certain trigger points. I don’t remember where they all are (because I never miss that med).

    All this being said I agree with everyone else that it doesn’t matter what the pain is from. Is he going to treat it? If he thinks it is fibro did he give you something to take to help? I don’t really think the blood work always shows when ra is active and should not be used as the only barometer for disease activity. If you can afford it, I think a second opinion would be a good idea. Oh and hey, take it easy on fibro folks. We’re not attention seeking and it is not all in our heads either. Just because it is seen predominantly in women the medical world immediately thinks it is in a person’s head. Geez will the medical elite ever get over themselves!!

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    1. Oh, dear, Mary! I didn’t mean to imply that people with fibro are attention seekers or that their pain is all in their heads! Possessed of this diagnosis myself, now, I know for sure that the pain is real, whatever its source. Instead, I was reporting on the attitude I’ve come across while reading up on the syndrome and in talking to individuals who see it frequently. My sister is one of them. She’s a respiratory therapist in a county hospital; she says they see many, many people in the ER there who seek opiate painkillers using fibromyalgia as a reason for their pain. Some might be real, she says, but the vast majority are fakes. They give everyone a bad name. Another person who you’d think might know is a long-distance friend’s husband. He’s a neurologist. He feels fibro is a sham.
      I don’t know what it is, but I absolutely believe the pain it causes is real.

      As for my rheumatologist–no, he didn’t offer further meds for this. I already have prescriptions for painkillers, though, which he renewed. And he’s referring me back to the orthopedic surgeon again for more discussion as to how to solve my problem with hip bursitis. It’s very possible that it’s the source of the pain in my legs–it’s certainly the source of pain in my hips!

      Nortriptyline is an anti-depressant that, taken in low doses, works on pain and helps with sleep. I’ve a renewed prescription for that, and it DOES work for me. Like anyone else, I feel better overall when I get adequate sleep.

      Sweet Mary, please don’t think I’m ragging on people with fibro. Absolutely I’m not. You’ve always been so kind and supportive, and your words carry a great deal of credibility in my book. Thanks so much for your thoughtful comment!

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  7. Wren you didn’t ruffle my feathers and I didn’t mean to make you feel that way. I just wanted to let you know that you’re not alone and that there are treatments for fibro (if that is what it turns out you have). I felt the same way you do now when I was diagnosed with fm. Frankly, I was relieved to get diagnosed with ra 2 years later. I thought “Finally, a diagnosis that seems real.” Regardless of what is causing your pain it is real and needs to be addressed. The low dose antidepressant worked for my fibro. The dose is so low it would never be considered therapeutic for depression but it evens out my sleep and helps with pain.

    I know it is devastating to get a second diagnosis and I am sorry you have had to go through it. I was diagnosed with another condition last year that nearly put me right off the edge and your positive blog helped me get some perspective on things. I thank you for that. I hope the ortho can give you some direction on what would be best for the bursitis. You are strong. The last 20+ years haven’t beaten you and neither will this. Hang in there.

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  8. Oh my heavens, Wren. A new diagnosis, and FML at that. I am so sorry that you’re now having to deal with this as well. Good luck with the bursitis monster. All the things that help FML also help bursitis and it does often just decide to go away. Sending hugs your way.

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  9. Wren, I am sorry the appointment upset you. Pain is pain no matter what they call it. It is just a name, a title, a label. You can chose to take it or leave it. It is sad that the Fibro label has been given negative connotation. I hear you. No disease or the people who have deserve that. You are in pain and you need to do whatever you need to do to get relief. I hope you are able to get that relief. Best to you!!

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  10. Wren, I just went through EXACTLY this. My RA is in drug-induced remission, and the doctor said that the pain I’ve been having is fibro. I fall into the camp of believing that fibro is often – not necessarily always – psychogenic in origin, so this diagnosis made me angry, mostly at myself. My rheumy said that in his opinion, some people with RA have pain for so long that it messes with pain perception in the brain, and many develop fibro as a result. He stresses that this does not mean it’s not real – just that it’s a brain chemistry/neural perception issue and not a muscle issue. This is why anti-depressants seem to help for some people.

    Another doctor told me that when he was a researcher, his team was able to induce fibromyalgia symptoms (reversable, thank God!) in a lab via sleep deprivation. I found this information helpful – I know that my pain definitely seems to relate to the quality of my sleep. So just in case this is your situation, refilling those meds is probably a good idea!

    I agree that in the end, it doesn’t matter what’s causing the pain – the important part is for you to have relief, and to feel secure that you have an accurate diagnosis. And it may very well be that the bursitis is the real issue – definitely worth a second opinion, because you don’t want to overlook something like that. I have concluded that my own fibro is most likely caused by stress, emotional issues (boy, do I hate saying that), and sleep problems. The pain has actually gotten much better since I came to this conclusion and started working on these things. I also realize that this may not be the case for everyone – there is still so much we don’t know about fibro. Whatever the case, I hope you find relief soon!

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  11. I will merely say, “CRAP!” on the new diagnosis as in I’m sorry that you have more crap to deal with. Here’s a hug, and I hope you get some relief from your pain.

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  12. Oh dear, what a bummer.
    Three things come to mind:
    1. As other have mentioned, bursitis takes ages to heal and causes awful pain, the more so when it happens in a joint that you cannot rest. Also, as I have been informed by my doctors, the bursa are not directly supplied by blood circulation. Hence, oral medication often has no effect or if so, a very delayed one. Stretching may improve this.
    I am on my second experience of bursitis in my foot, almost hitting the 12 months mark now and just about able to walk short distances with inlay soles – thank heavens for my bicycle. And at every appointment, my doctor cautions me, patience, patience… The first episode some years ago took 13 months to heal.
    2. Pain experienced over long periods of time can become neuropathic, i.e. the nerves, our brain signalling equipment gets caught in a rut so to speak despite the fact that the original cause of pain is gone or well looked after. Again, I have been there after a nasty oral surgery experience which had me on morphin at the time, unable to sleep. I got out of this with a combination of drugs (amitryptiline, pregabalin) and a daily program of mental exercises (progressive muscle relaxation, autogenic training – google) and several weeks of cognitive therapy with an experienced pain therapist.
    3. Maybe check the hospitals in your area for warm water therapy? I n my part of the world on the other side of the Atlantic, most hospitals with orthopedic departments have a small (room size) warm water pool, water at body temp, deep enough to stand in to your shoulders, for physiotherapy. This is standard fare in many accident/orthepedic traumas and not to be mixed up with aqua fitness.

    Keep your spirits up, try to distract yourself from time to time, don’t dwell too much on what you cannot change or solve right now, stay positive and aware of what is good right now. Best of luck.

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  13. Yes – the #2 part of Sabine’s comment is basically what my rheumy thinks – long-term RA pain becoming neuropathic after the source of the pain is gone because the brain gets into a rut. I think Sabine put it better than I did. I also think WarmSocks has a good point, that fibro is usually a diagnosis of exclusion. So the kind of neuropathic pain that follows long-term RA pain (or bursitis, or probably anything similar) may be a different kind of thing from traditional fibro. But it seems that it can be treated in the same way as traditional fibro. For me, sleep meds made a huge difference, as well as stress-reduction measures (or rather, changing my own responses to stress). Just knowing that the RA is not currently active also ended up helping the pain!

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  14. Sorry you’re joining the club, Wren. It sucks, doesn’t it?

    The med you’re taking for sleep is very common for fibro patients to take, to great effect in some. They use a different but similar drug for my sleep issues, which are mostly fibro-linked (I had some insomnia before I got it, but it’s gotten much worse since then).

    One of the reason antidepressants can work in fibro patients has to do with the chemical balance in the brain of someone who is in constant pain: they don’t have normal levels of serotonin, so when you give them a drug that causes them to maintain a higher level of serotonin, it affects their pain levels.

    My understanding is that there are two types of programs that show benefits for people with fibro: one is based on mindfulness techniques (which have been successful with all kinds of chronic pain issues), the other is very shame-based. At least one piece I’ve read theorizes that the latter work simply because they make the person so ashamed of their pain that they stop reporting accurately – many of them even edit what they admit to themselves.

    ~Blaze

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  15. Hi Wren, long time no “see”. I hate to question your doctor but RA induced pain and joint damage does not require positive blood markers or swollen joints. Numerous research studies document this and I’m living proof. And the American College of Rheumatology diagnosis criteria (both the old and new) recognize this fact. To throw your symptoms at Fibro seems ignorant of the disease and threw your emotions for an unnecessary spin. I think you should raise this issue with your doc.

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  16. Hi Wren, I read your blog but rarely comment, but felt a need to say something here. My bloodwork was fine when I was diagnosed with RA – so I have no idea how they will ever decide I am in drug induced remission if they just used that! The first rheumy I saw diagnosed me with fibromylgia and osteoarthritis – without xrays – I sought a second opinion at the cleveland clinic and recieved a diagnoses of seronegative RA based on the exam and xrays without any positive blood work. Some doctors use fibro to dismiss pain. I don’t want to second guess your doc and I guess it could be fibro but the diagnoses for fibro requires some pretty specific pain trigger points. The conitued hand pain certainly sounds like not enough control of your RA. Did he offer any suggestions to treat the fibro he diagnosed? If not, he’s just saying you have pain, live with it and that’s not acceptable. You deserve more than that! The bloodwork doesn’t tell the whole story. Your pain tells the rest of it. Make sure that your doctor hears that story. Don’t ever feel ashamed of your pain whatever the cause even if it is fibro. It’s a real disease and often a result of years of pain that RA brings and can be treated. Be well, live well.

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  17. Sorry to hear all this. I think those of us with an autoimmune disease history end up with a set of labels that are used to describe our problems but which are misunderstood by a lot of the medical community who don’t spend large amounts of time with us. FML, in particular, has been kidnapped by non-sufferers who want to get their drugs supplied cheap because there are no real criteria to classify it. You learn the trigger points and can imitate the symptoms with no difficulty and noone can argue with you. As you know, I have something that is called polymyalgia rheumatica – what does that say? No more than FML, it just means many painful muscles. I don’t know about your side of the pond – but in Europe it is known about and recognised and is not classfied as “drug seeker syndrome”, but then, as far as I know, neither is FML. Our doctors, even the sympathetic ones, are tied by these labels and the concept that all these darn diseases, whatever they are, merge into a continuum hasn’t yet gained a widespread acceptance. I believe it will come.

    I feel for you with the carpet being yanked from under your feet – I’ve been there the last weeks too. In February I was given an antibiotic that, in combo with the Medrol, caused an achilles tendon inflammation, rare but known. The GP had heard of it but not seen it. She has now. Not walking properly to relieve the right leg persuaded the left achilles to shout – hey, me too. Then I tripped and fell – and my back muscles went into spasm and my right sacroiliac joint went mad. I was admitted for iv treatment and one component, the iv diazepam, triggered brady-tachy-syndrome with residual atrial fibrillation. Also known but rare. That was fun, two consecutive nights I was alternately up to a pulse of 200 plus and down to 38. With cycling high and low BP. Certainly scared the docs! I nearly got transferred to the intensive care unit – I was hoping for a helicopter transfer to the specialist cardiac centre but it didn’t materialise. Then I suggested – no more iv diazepam. No further repeat. But I had 3 full weeks in hospital trying to get it sorted out. Not the 2 days that I went in for.

    And now, for the first time in my life I sit here and count out the pills. And juggle the hospital appointments. On average, two days a week, some days 3 visits to the hospital. And then the GP tells me that if you have rheuma of any form it’s recommended you should have meat not more than once a week, as little animal protein as possible. I have no idea where she got that from, it doesn’t appear to be standard and the dietician (thank goodness) seems not to be on the same hymnsheet. Vegan with fish doesn’t greatly appeal I’m afraid. Last Thursday a doctor told me I was disturbing her coffee break – and I disintegrated. I’d caught her out in several errors. But I was so fragile that didn’t register.

    It will pass and the answer will come – but where you are just now is about the same as I was over the weekend and it stinks. If we weren’t on opposite sides of the world almost I’d say – let’s go for a drink and have a mega whinge. Someone else has mentioned the concept of learned pain perception. At the moment I’m in the “if it’s on offer I’ll try it” frame of mind. What I do know though is that without the forum I particpate in and the others there who have listened and empathised I’d not be sitting here typing this for you. Maybe that would have been a good thing you might feel – but in sharing the burden is reduced. How I don’t know but it is – do try the FML options. You can always go back if it doesn’t cut the mustard.

    Gentle hugs – so it doesn’t hurt as much

    Love from Eileen (and can we please all have some proper dry summer weather – because this damp stuff SUCKS!!!!!)

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