Frustration with doctor, sick note embarrassment,what to do?

Dakky

Hi all,

I'm currently undergoing tests for what I assume is some form of arthritis or something related. I wrote a couple of posts previous regarding this.

I've had a ton of blood work, and every time it has come back with no inflammation to be seen. I had a nuclear test recentish, this came back that I had bone degeneration in all my joints bar my elbows. The doctor who relayed these results to me said it was worrying, as she'd remembered seeing me about two years before with something unrelated, and was shocked at the change in my physique, particularly the muscle loss.

This set of a good relationship with me and the doctor, as she appeared to be genuinely concerned, and was writing to rheumatology and general med on my behalf. The rheumatologist wrote back saying though, I had joint degeneration everywhere, there was little they could do. The doctor wasn't happy with this and wrote back saying something would need to be done, as my situation wasn't getting any better. Cue me now waiting on another rheumatology appointment.

General med also got back in contact with my doctor saying they wouldn't see me, as my weight though very low had stabilized. The doctor had also sent me for a dexa* scan which I had about three and a half weeks ago, and put me on Citroplan, the citroplan was for anxiety, as I've been having trouble sleeping due to my body trembling all night and heart palpitations that wake me from sleep., I find this recent trembling and palpitations very worrying, as i don't think it's due to anxiety, rather due to whatever illness this is.

I had forgot to make an appointment with said doctor on my last visit, and had to take whoever was available that day about three and a half weeks ago. The doctor I seen was one I'd seen only once about a year ago, and is a senior partner at the surgery. Because they can't find what's wrong with me I find it helps if i see a new doctor if I'm in particular pain that day. That day i was in crazy pain in multiple joints, and hadn't slept pretty much for a week due to the incessant trembling I've now developed when lying down.

Previously other doctors I have seen one off thought I may be suffering from some sort of temporary arthritis, this doctor told me straight out they were wrong and in his opinion I'm suffering from fibromylagia* I'd also mistakenly thought my citroplan had run out (I was shattered) He said to me, "either you're not taking it or you're taking two a day, which one is it?" I explained my mistake, and he accepted this.

Then came me asking for a sick note. (I literally hate asking for one, though I've worked all my life, I just find there appears to be an unhealthy stigma attached to receiving benefits nowadays. I used up all my savings before asking for one three months ago, I didn't have anymore money, so had no choice.) The look the doctor gave me when asking for one, i wished the ground would open up, made me feel very small.

He then went on to tell me that all mt blood work came back fine, no inflammation. I mentioned arthritis without inflammatory markers, he said it was theoretically possible, but very, very rare. He also told me he knew I'd suggested to other doctors i thought it was antibiotics that had started all this, and that there was no more the doctors at this surgery could do for me. I told him i wasn't blaming any of the doctors at the surgery, but he again said there was no more they could do for me.

The line he gave me ran out today. I just couldn't face going back to ask for another one. Before i typed this post I sat staring at the phone wondering if I should phone this morning for an appointment or not, but couldn't do it. I know I'll be cut off from my benefits. But if the doctors don't won't me back, then I'm not sure what I can do?

I know this post will probably seem like incoherent rambling, but i just had to let it out, and see if anyone has been in a situation like this before and could offer any advice?

Thanks for reading this, if you make it through of course

LignumVitae

Hi Dakky

It sounds like you have lost confidence in that particular GP which is understandable. Could you try and get in with the one you did get on with? Not all GPs get on with all patients and you need to have confidence in the medic treating you, I assume that is why there is usually more than one GP at a practice. Arthritis without inflammatory markers is not unheard of and is more than theoretically possible. Lots of people have it. I understand you have had tests to discover that there is degeneration in the joints. Has anybody ever suggested Osteo-Arthritis? Has anybody ever given or suggested an inflammation scan which will test for active inflammation? From what you have described it may be that they aren't certain that this is an inflammatory arthritis (forgive me if I have mis-understood, I'm a bit under the weather).

Inflammatory arthritis can be triggered by infection (because they involve the immune system). That is possibly a more likely cause than antibiotics but would coincide in terms of incidence - I assume you were given the antibiotics you felt caused arthritis because you had an infection.

During my time with rheumatological issues I have found that some medics don't like not being able to give a definitive diagnosis or answer so prefer to give one even when it might be inappropriate or wrong, some get brusk when there is no definitive answer and treat you as if maybe you are a hypercondriac but most will take the time to listen and help you if you are polite and responsive to them. Maybe that GP just had a bad day too and would be better on a different day.

Good luck but if you need help then do call the GP for an appointment, that is what they are there for.

stickywicket

Of course you 'had to let it out', dakky. That's what we're here for.

Staring at the phone and not feeling able to pick it up is not good. Can you try to make an appointment with the kind doc you got on so well with?

As LV says, there is a form of arthritis called Reactive Arthritis which arises due to an infection. That could explain the apparent antibiotic connection. Sometimes this goes away again for good but not always.

Do you have a friend or relative who would go to an appointment with you? It can be easier to plead our case with support at hand, even if they say nothing. Or you could change practices. Or maybe give our Helpline people a call.

barbara12

Hello dakky
You really did need to get that out hope its helps if only a little,
Right my story is similar...after 4 years a got to see a rheumy for the second time..he is convinced there is something other than OA going on..my iflam markers are normal, but my pain is not..it is everywhere..they are looking at some sort of inflammatory arthritis without the markers..so not sure if it is that rare..these consultants are so busy we have to keep on at them..must say the rheumy has been brilliant with me..one thing they are looking at is scarlet fever when I was in my teens then some joint pain...so stick to your guns till you get some answers.sorry didn't mean to ramble but to let you know there are others that have trouble getting a diagnosis.and you are not on your own...i do wish you well and please let us know how you get on...we are always here for you to talk to..

stickywicket

How are you today, dakky?

Dakky

Hi again, thanks for all the replies I would of replied earlier, but I went to stay with my brother for a couple of days just to get away from it all.

@Lignumvitae: As far as I'm aware I don't have osteoarthritis, or at least it hasn't been mentioned to me by the doctors. I know what you mean about seeing other doctors at the surgery, but there now seems to be a collective thought that among them they can no longer help me. By that I mean, rheumatology is their answer, as they're probably as stumped as me.

I can see the line of reasoning and on the whole it makes sense for them, but if I feel I can no longer mention any of the problems I'm having relating to my issues. Then this leaves me in a no mans land. I no longer even mention knew symptoms or mention old ones, as this is just answered with a head nod. It probably seems I'm being hard on the doctors, but when I'm met with responses of "there is nothing more the doctors at this surgery cn do for you" whilst I see my health deteriorate and new worrying unusual symptoms start to creep in. I suppose I don't know how else to react. I'll give you an example of something happening that I feel is being better addressed , or at least even addressed elsewhere:

I sometimes get crazy pain in the hinges of my jaw, like most of my other joint issues it's there most of the time but can flare up to be disabling. Recently this pain has been going into overdrive. Can't yawn, can't eat, barely talk. I have mentioned this to the doctors before, but nothing was said/done about it. It was so bad recently that it started causing multiple toothaches. Feeling there was no point going to the doctors as I'd already told them about it, and I knew nothing would be done, I went to the dental hospital, I had to do something.

I was seen by a dentist who appeared to be very familiar with joint issues, he said the the tendons in my jaw, muscles in my head were all inflamed. He had someone more senior come take a look, after some playing about with my jaw, they sent me for an x-ray and asked me to come back in a few days. I went back yesterday. The senior person I'd seen previously came out to see me and asked if I'd been to the doctors about this. I told them I'd mentioned it a few times and the doctor had seen me when moving my jaw was causing problems. I was told there was a problem with my jaw and they are referring me on to a specialist or I could end up with long term jaw problems. Was also told this should have been done ages ago by the doctor.

Now if a senior dentist in charge of other dentists and students tells me this should have been addressed before it got to this point, then I have to assume that it should have been. This says to me that concerns I had about issues not being addressed were just.

The above may seem like a good old rant, it's not meant to be like that (hard to convey thought and emotion typing) It's probably just overworked underfunded doctors with not enough time or experience in certain areas. But I also think ego can play a part with certain doctors, some being so confident of their ability to diagnose, that once settled on their diagnosis, they won't budge.

@Lignum, yes i had a nuclear scan, that's what detected the degeneration in the joints. I was told if I could induce the inflammation to do so before the scan. I foolishly didn't (I could have, I know what is guaranteed to set it all off) as I thought it would show up anyway, that and I was just recovering after a few weeks of hell. Thanks again for the reply.


@stickywicket, I wasn't able to see that particular doctor, very unfortunate. Reactive arthritis I looked into, could be that, but I think it's delving off into something else now, what I have no idea. The insane trembling at night's (last night was unreal, bed was shaking with me) Heart going off the charts randomly, Pains in head that'd stop a bear in it's tracks, waking up gasping for air, still bleeding when i go to the toilet.

You're right, I really should take someone with me, I always forget stuff, and maybe somebody else chipping in that's seen this at it's worst might stir things up.

Today I'm not too bad, still shaking a bit, pain and cracking in multiple joints, but I'm used to that now though. Thanks for replying to me.

@barbara, thanks for the reply! Yes I just need to keep at it. I'm lucky enough to have had a second referral to the rheumy* I hope it comes soon. I'll make sure I'm buckled that day, I'll live with the pain afterwards if that's what it takes to get things going.

The antibiotic thing I mention was just that I'd seen symptoms similar to mine from people who'd taken a reaction to antibiotics. The first dose i had was when all this started, about ten days into the course. The symptoms (painful and cracking joints) then started to wane. I was then given a much stronger course, months later whilst i was l almost fully recovered, and that's when all this really kicked off big time. It might have just been coincidence, but i spoke to a consultant and a doctor at a hospital who had spare time and he/she seen similar symptoms to mine as a reaction to antibiotics and thought there was a good possibility that this might have caused it.

Even the nice doctor I see has come round to thinking this may have been the cause, but has told me if this was the case to prepare myself that things might not get better.

I hope you can get a firm diagnosis soon Barbara and aren't in too much pain.


Sorry for the novel again all, thanks for the replies.

stickywicket

You've had it very rough, Dakky, and I hope the short break with your brother was restful for you. I'm also very pleased that the dental hospital have taken steps about your jaw problems. That;s a good thing and a good idea of yours to go there.

It's true that, if you have an auto-immune arthritis the GPs can't prescribe for it but they can prescribe pain relief. I'm sorry, you've probably said what you take for that and I've forgotten :oops: The shakes and palpitations etc in bed sound horrific. Might they be a reaction to any meds you're on?

Dakky

Hi stickywicket,

The pain relief I'm on is co-codamol 30/500. They're okay for minor relief, but when things kick off they aren't much use to be honest.

yeah, the shaking thing is horrific, been going on about three months or so now. Started just as minor tremors in my legs, like tendons vibrating or something, but has now moved into my chest and back as well and is really starting to intensify. Whole body shaking as I try to sleep. Heavy heart palpitations have joined in recently too, cause we all know misery loves company. Both can wake me out of sleep no problem. I tried to emphasize how much this is worrying me at the doctors, but nothing has been done about this. I don't think it's a reaction to the meds, as this started before I was even put on the Citroplan*

I had a visit from a friend about a week ago. As he woke me from sleep and I had previously mentioned it to him I let him feel my chest vibrating/shaking. Freaked him right out, told me he'd drive me to the hospital right then, lol. Very frightening I have to say.

Thanks for the reply stickywicket. I enjoy reading your posts on the forum, the exercise/unfit thread was great, your use of the emotes in the OP had me laughing, particularly the rolls eyes one, thanks.

stickywicket

I'm afraid I can't help but I hope someone does soon as it all sounds very scary. The cocos alone shouldn't do that (Well, I'm no doc but I've never heard anyone else say they did) and I think citalopram seems to be prescribed with them regularly. Are you taking anything else, either prescribed by the doc or over-the-counter / herbal stuff?

Thank you for the comment on my posts. I think we need a laugh or two to compensate for all the unfunny aspects of arthritis.