Hello from Newbee

Just saying hello to everyone.

A little bit of history. I have had pain for 3 plus years. Been going to see the doc on a regular basis complaining of pain, unable to sleep [probably depression as well due to pain]. all I was given at first were pain killers and one GP said ''it was all in my head''. Then one GP said Fibro. and put me on Amitryptyline 20mg to start plus added Tramadol. Went back to see same GP who diagnoisised Fibro and when he read my notes said what idiot GP said you had Fibro I told him he did.

More blood tests showed that my CRP and ERS levels were up so I was referred to Rheumy. Rheumy put me on Methx, sulfslasadine and hydro [sorry about spelling]. Took them for 6 month but no improvement and I was still in pain. so she stopped treatment. She referred me to pain clinic.

Saw pain clinic last month and he prescribed Pregablin to go with my paracetamol, tramadol and amirtryptyline. Pain is no better. No one can touch me I am so sensitive. All my joints hurt like hell and most are swollen. Yet even pain clinic can tell me what's wrong with me [yet].

To cap it all I now have a problem with my jaw. I saw a dentist 3 times because I thought it was toothache. I can hardly eat or drink anything and my whole face and neck are swollen.. I have been given Naproxen and will be seeing ENT [was put in as urgent] on Christmas Eve.

Sorry for long moan.

10 Replies

  • Sorry to hear your problems. The rheumatologist obviously thought you had some kind of inflammatory arthritis if they put you on those disease modifying meds (DMARDs), but has clearly reconsidered if you didn't get the expected result. It could be that you don't have Rheumatoid Arthritis (which the DMARDs usually work for), but have spondyloarthritis instead (which DMARDs don't usually work very well for, but NSAIDs like naproxen often do). Have you ever had either a short course of steroids or a steroid injection? A good response to that would also suggest inflammatory arthritis. The jaw joint can be a site of both enthesitis (spondyloarthritis) and I believe you can sometimes get osteoarthritis or RA in it too.

    I've been through the same stuff - told not RA, but fibro. Then went to an ankylosing spondylitis specialist rheumatologist and finally got the diagnosis of AS. I have widespread enthesitis with it, which is inflammation at points where tendons join onto bone, so I can get inflammatory pain at just about any joint in my body, though I would feel it most tender on the edges of the bones, and the outside of the joint, rather than the pain within the joint that goes with RA. See if your GP will send you for a second opinion rheumatologist - but this time do some homework and try and find out if there is an ankylosing spondylitis specialist rheumatologist or clinic in your area, and ask to be referred to that.

  • Thank you earthwitch for your reply. Its actually nice to tell someone who understands. You actually explained the type of pain I get in my joints, I can actually run my fingers [allbeit it hurts] from the corner of one joint right up to the next joint.

    When I saw pain clinic they give you a drawing of a body to mark where the pain is, I just coloured it all in.

    Will look into trying to see a specialist Rheumy. I had a steroid jab once [which actually felt good for about a week] not been offered any since.

    The most annoying symptom I have developed recently is tingling in my fingers when I wee or what feels like small electric shocks whenever I touch/grab something. Most annoying because I keep dropping things.

    Thank you again for reply very helpful glad I joined.

  • try to find a map of "enthesitis points" by googling - I use a body map a bit like one of the ones in figure 1 of this article hindawi.com/journals/ijr/20... to colour in my pain points, and they are all exactly over classic spondyloarthritis enthesitis points.

    I'd worry about those nerve zaps, that you have a spinal nerve that is being compressed. Might be something to mention to your GP, and see if they want to refer you back to the rheumatologist to have a full spine MRI (though it can be quite hard to actually get them to agree to do a full spine MRI). For the record, I also get those nerve zaps when I wee, and at other times, and I definitely do have some nerve impingement. Not that there is anything that they are going to do about it right now (unless it got to permanently being like that). If you even think you have any other problems with passing urine - particularly the feeling that you aren't able to empty your bladder completely, or that it is very hard to start the flow, or your bladder doesn't seem to be "squeezing" very well (i.e. takes ages to empty properly at a very slow dribble), then definitely DO see your GP as soon as possible as this is a red flag for much more severe spinal problems that need to be dealt with.

  • Welcome Ladycaz,don't worry about moaning,we all do it. I'm so sorry you are so ill.I think a lot of us here have been through the same hoops ans taken the same drugs to no avail. Not much help I know,but you are not alone.x

  • Thank you beaton. The moan actually made me feel better. It is going to be a change to talk to people who actually understands.

    Oh and I don't want to look like I'm being rude by not being here but I am going to see my son tomorrow for the week because he can't come home for Christmas this year.

  • Enjoy your time with your son, We will be here for you whenever you need us.x

  • Hi Ladycaz, welcome to the site. Firstly hope you have a nice time with your son to spite your health. It does sound like some inflammatory illness, were your joints swollen when you first started pain relief? because if not the swelling could be caused by one of the drugs prescribed for your pain. There are many things that can cause joint swelling and pain, it needs to be investigated further as pain is only a symptom not a diagnosis for treatment at a pain clinic.Sorry if I sound synical but I,ve had pain for many many years and swollen thumb joints and received some of the run around you are getting. I do have hereditary arthritis, in the early days there is little joint distortion, so it is often labelled as fibrosis or in the mind especially if you are young.Good luck with your health enjoy hols.

  • Hi, welcome to the site. You will receive loads of support here and the best thing is we can moan to our hearts content! Welcome aboard and sorry you are suffering as you are. Hope you have a great relaxing time with your son, Ann

  • Hi Ladycaz,

    I hope things are feeling a little better today. Do feel free to moan as much as you want - it gives us all permission to do the same and know that we'll be heard.

    I recognise some of what you wrote regarding the joint pains but particularly concerned about the swollen face and neck - I hope it's not interfering with your swallowing or affecting your glands. I was wondering if it was possibly linked to something you're taking - some sort of allergic reaction?

    We tend to discuss quite readily what medicines we're taking but often don't mention any supplements or even food or drinks we have everyday that could be 'clashing' with our meds or even more worryingly, adversely impacting on our specific conditions.

    There is so much good advice and support on this forum. I really hope you find some solutions and don't forget to share your findings for others to benefit from your feedback.

    Welcome to the Forum

    Stay Positive, Stay Strong

  • A huge thank you for all your posts of kind words and thoughts. It's a relief to have a moan [and gossip] with people who understand.

    Really enjoyed my time away with my son. [and it gave me some respite away from looking after my other son]. I did overdo the walking on a shopping trip and paid for it with besides the pain and stiffness 2 extremely swollen feet and ankles but thoroughly enjoyed myself.

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