SLE and APS but ?fibro pain (different pain)

Hi, sounds a bit odd but I have pain from the lupus but I also have this horrible pain but not pain, in my upper back (it's pain but not like an ouch pain it's a constant dull like pain) hope that makes some sense!!

I feel like i just want to rip the muscles out of the top of my back below both shoulders. I'm on zomorph and this doesn't touch this pain.

At the begininning of all this illness (17 yrs ago) aged 21 fibromyalgia was diagnosed but since having aps and lupus diagnosis it's never been mentioned again??!

If u press on these points it's very sore.

I just don't know what to do with myself when it's like this.

Does anyone gets this type of pain and what is it from and what helps it?

Thanks!

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12 Replies

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  • I get it between my shoulder blades and just above my hips it's very uncomfortable I think mine is like a cramp? Not nice

  • Mines there too

  • Hi - Sorry you are having such a tough time. I know what you mean and can sympathise. I also have APS, Hashimotos and Sjogrens. These three tend to come as a trio and "Fibro" pain is often mistaken for either Thyroid or Sjogrens. Have you been tested for either? If not I would advise a full thyroid panel. Also Vit D, B12 and ferritin as if any of those are low the cross over symptoms are similar and pain levels higher.

    Here is a tip for your shoulder pain. Put a tennis ball in a sock, throw it over your shoulder but hang onto the sock so you can adjust height and lean up against a wall so that the ball falls at the point of the pain. Lean in to the wall so the ball rolls over the spot. It will hurt but it will feel better afterwards. Do this as often as you can bare to. Also some paracetamol and a low dose ibuprofen can help the inflammation of these tender points. I hope that helps.

  • Hi Sara_A,

    Sorry to hear that you are experiencing pain. Have you discussed this with your doctor?

    If you haven't seen it before, our blog article about pain management may be helpful for you. You can read it at lupusuk.org.uk/pain-managem...

  • I've made app with gp this afternoon. Probably be a waste of his time tho! What more can they do!? I'm already on slow release morphine. I just have no kind of life at the moment going to bed at 6.30-7 pm every night!

  • If you do have fibromyalgia there are other treatments available. Some people find tricyclics (also used for depression) helpful - fmauk.org/what-is-fm-highli...

    If you haven't previously been referred to a pain clinic, perhaps they can arrange this for you?

  • I've been to pain clinic where I used to live down south but when I moved up here 6 yrs ago they just said the pain service was rubbish so didn't bother to refer me!

    How will they know if it's fibromyalgia rather than the lupus that's causing this pain in the upper back? I'm on amitriptyline but also fluoxetine a low ish dose of both cos I think u have to be careful with both together? So maybe I will see what he says about stopping the fluoxetine and increasing the amitriptyline?

    Thanks

  • I'm afraid that I am not medically trained so I cannot advise you about this. Fibromyalgia has distinct diagnostic criteria from lupus which you can learn more about here - fmauk.org/what-is-fm-highli...

  • Fibro pain is that dull ache feeling at least in my experience as a fibromyalgia suffer but it's just a opinion I'm no dr

  • I have Hashimotos and SLE and experience pain all over but I carry a lot of tension in my neck and shoulders so I try to go for a regular deep tissue massage which is a huge help it hurts but is a good pain as it's releasing a lot of knots and tension

  • So I've been to the drs and feel stupid for going wish I'd not bothered! His response to my upper back pain in my muscles was just that my muscles were very tight which is fine I guess but I came out feeling like he thought it was something that had just started and not the long term problem that it is. He just said that we weren't made to sit at computers and drive! Which I said I dont do that much of either anyway.

    Just said to do some stretches and if it wasn't better in a week to go back! I've had it for 17 yrs!

    When I said about previous mentions of fibromyalgia he just said 'no no uve got enough going on as it is' and brushed it off!

    So now I feel more peed off (sorry!) which will prob not help the pain ha!

    I'm seeing my rheum in 2 wks so will just ask him!

    I get so upset and fed up being made to feel like a complaining idiot and like just because u have a couple of long term problems aps and lupus that they aren't even gonna consider there may be something else, that would actually require different treatment actually.

    Sorry for moaning am just annoyed, also with myself for bothering to go!

  • Got another drs app today for this awful upper back pain! I've been stretching the muscles like the dr said but I'm soo fed up of this pain!

    Rang to get some more muscle relaxants that aren't on repeat cos not had them since last yr and they said I need to see gp so got app today with a dr that always just says are u depressed!!

    So as soon as I got off phone I'm crying at the thought of it as I'm feeling really tearful about it all anyway. Was crying at 4 am this morning with it. If I didn't have my kids I prob wouldn't bother anymore!

    I don't know if to cancel the app or go but how I'm feeling right now I think I will probably cry in the app then I know she's gonna say I'm depressed! X

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