being diagnosed

I am currently waiting an nhs refural for RA...the pain I suffer is getting out of control. I have pain in ankles,wrists,hands and shoulders daily....but I also get a bad lower back. I go to sleep in pain and wake in pain, it takes me at least 30 mins for my joints to losen in the morning. I feel completely disabled and noone understands what I'm going partner has no idea how bad it actually is. I'm on codrydamol and a gel rub for pain management but this doesn't do much. I feel completely disabled and I'm 29..don't think I'm going to be able to work for much longer. Help!!!!

22 Replies

  • I presume your gp took blood tests to warrent a referal to see a rheumatologist. Usually you do not wait very long to see them, because they like to get a diagnosis made as quick as they can, so that treatment can be started. If you have waited for a, long time, perhaps you could phone the rheumatology dept and ask them what the waiting time is.

  • No he didn't take bloods. He looked at my hands and the lumps on my joints and put in a refural. I know he said 6 weeks but symptoms have been going on along time now :(

  • Feel for you Dolly. It feels an age early days when waiting for referral because all your GP can give you is mild in comparison to what you probably need to control your pain & ease your stiffness. I'm surprised your GP didn't request bloods to confirm but guess he must be convinced enough & at least has started the ball rolling.

    Hope your appointment comes soon & you can get some relief. The world will start to look a brighter place once you're inflammation is under control, honest!

    Keep us updated.

  • Thank you!!!!!

  • Hi Dolly84

    Welcome to this site, I'm so sorry you are having a tough time just now.

    I think they said 6 weeks to me too, but when I went online to book my rheumy appt it was actually only 2 weeks so hopefully you will find that too.

    The first bit is horrendous, i have never known pain like it,but once they get you started on drugs etc things will look a whole lot better. Perhaps you could consider some time off work sick while you are struggling with this?

    Take care xx

  • Hiya, poor you, it's not at all nice and the wait to see the doctors for the first I me seems forever. Ask your chemist for some good no steroidal anti inflammatory drugs as they help. Hot or cold pads also help. I hope you get seen very quickly xx

  • thanks! I hope so....I hate the fact that people who dont suffer with this or a similar illness have no idea what you go through everyday :(

  • Omg I'm in so much pain tonight! :(

  • Is there a chemist near to you open tomorrow? If there is I'd ask if there's anything they can give you as an anti-inflammatory that won't interact with co-drydamol. You should find it at least takes the edge off, just make sure they give you something without paracetamol in it. Failing that do you have a walk-in centre you can go to till you can get to see your GP. It really does sound as though you need something to control your inflammation till you get your Rheumy appointment. I'm in that go to bed in pain wake up in pain cycle at the moment & it's so debilitating on top of the pain you have at the moment.

    Hope you get some relief tomorrow & start to feel at the least a bit better.

  • Hi Dolly, So sorry to hear of your plight. I've just woke up a few minutes ago with serious sciatic pain, which has caused me to be housebound for the last 6 weeks. I've just dosed up with morphine, diazepam and codeine, so if i ramble on incoherently please forgive me. ;) I also have a hotwater bottle under my bum, which helps ease the pain there.

    Anyway, enough of my woes. You could give voltarol a try, which is availiable over the counter. I've used it occasionally when my RA has flared-up and have found it pretty effective on times. I believe it's ok to take with co-dydramol but check with with the pharmacist first.

    Best of luck to you and hope you get your appointment soon.

  • Hi Wishbone,

    Try 'Googling' - 'Sciatic pain and Vit D deficiency'. my Doctor diagnosed my extremely painful tailbone pain and I also had sciatic leg pain. My Doc prescribed 1000iu of D3 (chlorificerol) and my tailbone pain and sciatic leg pain eased up a bit, someone on HU told me to checked out 'The Vitamin D Council'

    I then upped my D3 dose and both tailbone and sciatic pain dissapeared within a couple of days. When I forget to take my dose they come back with a vengeance.

  • Thanks ever so much for that Coastwalker. I'll certainly look into this and make an ' appointment with my GP in the morning. I just pray the D3 will do the trick for me like it has for you. I've certainly got nothing to lose as I feel this sciatica just ain't going anywhere on its own accord! :(

    The pain does seem to eminate from my tailbone area, then across into the top of my right buttock, next appearing from the knee down.

    I've never experienced prolonged pain like it and I've had quite a few nasty RA flare-ups in my time! It's more debilitating too. The first fortnight or so was absolute hell for me and my wife - bless her for looking after me without so much as a tut. I couldn't sit, stand, or walk for more than a few minutes and had to spend the vast majority of time flat on my back, and even then it was none to pleasant.

    After several visit to GPs (including out of hours on a couple of occasions) and being given inadequate pain relief, I eventually got referred for assesmant and finally got the pain relief mentioned in my post above. Though I hate taking the morph and diazy as it really zonks me! I was also referred for an MRI scan on May 24th.

    The sciatica has eased a bit this last couple of weeks, providing I don't stay on my feet too long, and I've been able to cut back on the meds. On saturday I decided to have a go at jet-washing the back yard. Not too strenuous a task or so I thought. BIG mistake!...come evening it was back on the morph and diazy - hence the comment in my post to Dolly.

    That was a bit of a long winded reply - a symptom of 'cabin fever' I guess. ;)

  • Don't worry about your Cabin Fever wishbone, think many of us have been there ;)

    After I read your posting I checked mine again :O can I just add that my Doctor actually found that I was Vit D deficient from my blood test and that was the only reason Doc gave me the Vit D3, I then realised that it had an effect on my Tailbone pain (that Doc diagnosed) and sciatica leg pains.

    On Thyroid Uk on here (HealthUnlocked) many have said that they have found that a good dose of D3 has helped or got rid of their restless leg syndrome, sciatica and back pain. :)

  • If Doc gives you blood tests ask for a print out of your bloods and their ranges. My Vit D was low at 41, then went up to 124 within 6 months, but Doc was happy as I was still within the correct range, even though I was taking a higher dose. D must not be too low or too high as that too can create problems with calcium.

    If you get no joy with your Doctor, you can PM me if you wish. :)

  • Hmm, not sure how to go about this(?) Do you think my best plan of action would be to ask my GP if I could have my Vit D level checked when I have my next monthly blood test, as I've read that this may have something to do with my sciatica?

  • Hi dolly

    Sorry to read you were in pain last night. In the weeks before I saw rheumy, I was totally desperate, had painkillers, anti infl, heat pads, ice packs, and to be honest nothing really touched it, I didn't have more than an hours sleep at a time, awake most of the night in misery and of course lack of sleep just adds to the problem.

    When I staggered in for my first appt he asked questions,ordered blood tests and gave me steroid jab......this was about 5pm, by 9pm I was almost pain free and had my first nights sleep in almost a month. Steroids don't actually treat the underlying problem and only last a few weeks but can bring relief while you wait for any other drugs you may need to kick in. Just wanted you to know that there is something that can give relief, but you need to see rheumy first.

    Hope you have a manageable day today and keep in mind that things will get better for you xx

  • Thanks are all really supportive. I managed to fall asleep finally but now I'm awake in pain the cycle begins! I'm just holding onto the hope that there's light at the end of the tunnel

  • Hi Dolly84, sorry to hear what your going thru but once you start treatment I am sure things will improve for you and you may be able to continue with working, the treatments are getting better all the time and enable some people to continue a semi normal RA life, not to say you wont get flare ups and stuff and you may have many treatments before the suitable one for you is found. Keep us posted as you start on the road of your RA journey. xx wish you luck with it all x

  • Hang in there it can get better xxxx hot water bottles helped me in the early times and only other sufferers truly understand so use this board for support .. it won't always be like this xx

  • Sorry about your pain - it is evil I know. But this is often the worst bit and once you are on proper medication things will get better. Like others have said, go talk to your GP about pain meds, and about pushing for a more urgent appointment. You could also ask about getting a steroid injection to squash the inflammation. Most people find that they work very well, and last several weeks. But the problem is that if you have one and get an appointment before it's worn off then it could mask the inflammation so well that there's nothing for the rheumy to look at! So it can delay getting on a proper course of meds in the long run. It's hard, but also don't forget things like ice packs and hot wheat bags that can also really help. And taking some time off work! But in a few months you should be in a very different and happier place.

  • I really hope so! I feel okay at the mo but I usually do for a few hours before the pain kicks in again. So hard trying to explain to my partner how much pain I am actually in!!!!! If I had the money I would go private as I'm struggling to cope, esp with two young children who want to go to the park etc

  • Hi Dolly,

    So sorry to hear the pain you're in.

    I'm in the same position as you waiting to see Rheumy. I saw the GP on 1st April and had blood taken. I was given naproxen to manage the inflammation and pain, they're helping but I'm definitely not pain free. The blood results came back positive for rheumatoid factor and at this point the GP referred me to Rheumy. However I discovered I'd been referred for a routine appointment! I was very anxious and extremely concerned that the longer I had to wait the more damage was being done.

    After posting on here with my concerns I got great advice and encouragement for the other members and it gave me the confidence and courage to contact the GP and ask for an urgent referral. This was agreed and I am currently waiting for appt, they're definition of urgent is different to mine. I'll be calling them again tomorrow!

    Don't hesitate to contact your surgery tomorrow to discuss the pain management and ask for urgent referral. Good luck and let us know how you get on.

    Lee x

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