Toe pain divimg me mad

Toe pain divimg me mad

This may be a silly question but my big toes are in agony!

The pain is like I have ingrown toenails but I know my nails are fine, it doesn't happen constantly but when it does I cant even put a sock on my feet, could the swelling of my toes be putting pressure on my toenails? I havent heard any one complain of this before so just kind of putting it out there! The doctor just looks at me like I've lost the plot, im in the middle of getting a diagnosis for this horrible thing that's completely taken over my life! My feet and hands suffer terribly and I see the rheumatologist in January after fighting so many symptoms for 6 months xxx

22 Replies

  • I can relate to that Jackie. Quick précis...I'd been creosoting the shed sitting on my haunches a lot & my feet started hurting a couple panels into the job. Two weeks later they were still hurting, particularly my big toes, to the point my h said I was waddling like duck & he was convinced I had gout they were so swollen! I could have quite happily pulled my big toenails out if I thought it would have eased the pain, similar to a tooth that needs pulling! I went to my GP as my feet had also become very stiff & over the counter ibuprofen was doing nothing to ease the swelling. Whilst talking through symptoms she questioned RA (I prefer to call it RD now) & after examining them she was convinced enough to order bloods for RD. As I was living abroad & things are done slightly differently the results came back the next day, she prescribed an NSAID & pain relief & the Receptionist made an appointment to attend a Central Diagnostic Clinic for 2 weeks time (she told me to stop taking what she'd prescribed a couple of days before my CDC appointment). At that appointment I had the full gamut of tests & left with a formal seropositive diagnosis, a DMARD, Cox-2 NSAID, a short course of steroids & pain relief & an appointment with a Consultant for 3 months time. That was in 2008 (I'd just turned 48) & my feet are still my worst affected & demand comfortable shoes (no heels, hence my username!), nevertheless I'm considered controlled on my mix of meds.

    Ok not so much a précis lol ..... but I've certainly experienced agonizing toes & really, really feel for you. Please see if your GP can prescribe an intermediate NSAID & pain relief, the end of January is too long to wait with no relief, even more so when it's this time of year, but I'm sure you already know that! :(

  • Oh how frustrating I just wrote a really long reply and I fear its vanished somewhere! Nomoreheels your name is soooo right and I will rewrite my reply after ive sorted my gaggle if children out! Im currently on naproxen, gabapentin and cocodamol x

  • No worries, it's been happening a lot on the site recently & to me more than once, it's sooo annoying! You get your children sorted, grab a cuppa & try again whenever, don't stress. ;)

    We all react differently to drugs but naproxen does nothing for me, I'm scripted 100 30/500 co-co's but reducing on them & I won't try gabapentin, opted for BuTrans patches & amitriptyline instead which is working on my OA/CS pain now I've steadily increased both over a few months. Speak later!

  • I must admit twitchy toes I don't see the point off naproxen for me but I carry on taking it, ive just reduced the gabapentin down from 4000mgs a day to 2400, that's a harsh drug but the only one that stops the numbness and pain in my hands, again im waiting to see a neurologist! Wait wait wait! No urgency at all, makes me boil! I managed to bath and shower my 4 children without stubbing or catching my toe, its agony but then I can wake up tomorrow and its fine! Whatever this arthritis is it isnt just restricted to pain either, exhaustion to the point of collapse and just feeling yuk, burning up one minute and ok the next, my jaw swelled up like I had an abscess but the dentist riled that out, the doctor gave me ibuprofen and then the next week wanted to give me naproxen, im already on them so he panicked when he realised he had double dosed me with both drugs, sometimes I think we could all type for hours about our experiences, and I do apologise if my words arent spelt correctly, my fingers go numb and sometimes just press anywhere! As always thanks for your reply and advice, I should be asleep really but that's something else out the window, I was on amitriptyline but I was awake at 5am on the loo for ages, it wasn't pleasant xxx

  • It sounds as though you'd benefit from seeing a different GP at your Practice is that's at all possible. A med review would be by first request if you can see someone else. If naproxen isn't working there's little point continuing on it, there are plenty of NSAID options so that should be pretty simple. I found celecoxib reduced my swelling considerably within days when I first started treatment but I did also start steroids on the same day so it's likely the two together made the biggest difference. The gabapentin, if it works for you it seems odd the dose is being reduced if that's the case? I do wish everyone was fine on every drug! Ami has really helped me, particularly since getting up to 25mg as it relaxes me enough to go to sleep & eases my cervical muscles to stop the damned wearing headaches & now getting (mostly) restful sleep after months surviving on a couple of hours cat napping which isn't good for man nor beast. Fatigue is typical with autoimmune problems, it can be very hard to deal with even when on the correct meds (DMARDs at the least) so without being treated properly yet you're in effect continually flaring as you're immune system is running riot, hence the exhaustion.

    In reality you need to be seen & soon by a Specialist, be it Rheumy or Neuro but in the meantime your GP should be made aware just how much you're struggling, not only with your physical body but also having 4 children to care for (I take it alone?) & prescribe appropriately for your pain & inflammation. Time to start getting pushy with your GP or possibly a new brush would sweep clean? x

  • Nomoreheels did you find that you have had to battle for treatment or even a proper diagnosis, thinking of heels I put my last pair of heels in my daughters dressing up chest the other week, I have that many gel, memory foam and cushion insoles in my trainers I can't lace them up, I love to be barefoot nowadays, winter is a bugger though, I look funny going the school in flip flops! I really dont care anymore xx

  • Hello Jackie. Has your doctor ruled out gout I wonder? I only ask this because I believe it affects the big toes most commonly of all. My late dad suffered from it very badly and I believe it is made worse for many by certain foods - certainly extremely painful I recall from his flares. It's a type of arthritis but I don't think it's autoimmnune - although I'm sure it's possible to have it with RA or other types of inflammatory arthritis too. Twitchy x

  • I have this also lol thought it was just me!

  • Its amazing how you many of these symptoms and pains you assume you're alone with, its a big help to know that so many people are going nuts with you, lol xx

  • I get sharp shooting pains in toes, and sometimes fingers, mainly at night. I see it as part of this wretched disease. I hope your rheumatologist is able to put you on decent medication. I am on Enbrel only and it is mainly doing the job considering how I was before I started it several years ago.

  • Hi magglen, this my concern there just doesn't seem any urgency with them! Just recently my hair is snapping of which its never done before, I have horrible looking dents in my finger nails, the list goes on, my children have seen me gone from super mum to super ill x

  • Hello, I am on enbrel and my hair is breaking off and I h.ave a problem with blood blisters around my cuticles which I will show my GP when I see him. I am going back to see him as he changed my water tablets to reduce the swelling in my feet and legs. This last weekend my hands swelled, you couldn't see my knuckles and I had a flare up, every joint in my body was painful and made me feel sick. All I wanted to do was sleep. I went to see my hairdresser last Thursday as I was going to a Christmas luncheon and she gave me a treatment for my hair and she also cut my hair so that it looked a little thicker. I am also coming off prednisilone slowly and she said once I have stopped taking the prednisilone my hair will go back to normal. From what I have read all these medications help but they effect everyone in different ways. I read on here that someone was also on enbrel and others on prednisilone and they both have a problem with hair loss. I understand how your children must feel, I have changed so much over the past 20 years, but mostly the last 2 years, so much so I have had to stop working, retired last August after always working full time. I have a prolapsed disc as well as RD. I put cream on my hands after soaking them in warm water and put cotton gloves on at night whilst in bed. I wish you well, this is a nasty disease we have to deal with. Sue x

  • Your poor love. I do believe in making a nuisance of my self if, I don't get the help I need, so do keep at them

  • Hi , just to say hi! And welcome and ye ouch re toes but do get the gout blood test done too ! XxA

  • Poor you. Sometimes. though thankfully not always, I too have intense pain in my toes and yes, it feels as if the nail is growing sideways into the flesh. If I accidentally touch that spot, I hit the ceiling. There is very little to show for it but it does coincide with flaring elsewhere in the body. The good news is that it does pass.

  • mI had a similar thing happen to my big toe on left foot, I had just bought some new flat shoes which were so comfortable in the shop (Clarks, so weren't cheap never had trouble with Clarks shoes before) after the first wearing I noticed my big toe was very red and swollen so decided it must be the new shoes. A few days later I noticed some bruising under my nail and when I touched it I could have hit the roof. After the swelling went down the toe under the nail was really bruised (almost black) toe is not painful now but the remnants of the bruising is still there. Didn't go to the doc's with it, just assumed it was the shoes for a while then when it didn't subside after not wearing said shoes I put it down to this horrible disease that everyone on here suffers from. I do think though we are in danger of blaming all our symptoms and pain on RD.

  • Hi jackiemoran,

    so sorry to hear about the pain and other symptoms that you are experiencing. It is good at least that you are seeing a rheumatologist in January. The symptoms that you have described, fatigue, flu like symptoms are ones that are sometimes experienced by people with RA. I have put a link to the section on our website that talks about symptoms and RA:

    As has been suggested here already, in the interim while you are waiting to see the rheumatologist it may be a good idea to speak again to your GP about pain control as a first aid measure until you get seen. Do you always see the same GP? Is it possible to be seen by another GP in the practice?

    I hope that you get some relief soon. If you would like to talk to someone about RA, please feel free to ring the helpline on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Best wishes

    Beverley (NRAS helpline)

  • I have this too. I went to gp as have diagnosis of RD She did blood tests. Said they were clear and she had no idea what it was!! That was in August and still the same. I have Rheumy next week so maybe they'll have some answers

  • Did your RD first present in your feet Georgia3? I sometimes wonder if we feel things more in the joints/areas that that we first noticed & went to our GP about when the RD journey started. My feet are still problematic even though I'm considered controlled & they're not brill at the mo as I've not injected my MTX for 3 weeks now trying to get over an infection. Just thinking....

  • Yes. My feet were the first sign in 2007. I was diagnosed in 2009. I have also fractured both ankles within 3 years. The left didn't heal so well due to damage so can't walk downstairs properly. Permanently exhausted. I'm on mtx and hydroxy. Tried Rituximab worked first time but not second. Just keep hoping. Does seem that wherever it starts gives the most pain Although my hands knees etc not so good either

  • So maybe my thoughts have some value, that wherever we first noticed a problem which took us to our GP & in turn an RD diagnosis that's a particular weak spot & increased level of pain pre-empts a flare?

    Just a idea 're your ankle fractures.... have you ever had a DEXA scan to determine your bone density & estimated fracture risk? I have osteopenia but I'm borderline for osteoporosis & prescribed a weekly bisphosphonate (Risendronate) & daily calcium & VitD supplement (Adcal-D3) to preserve my bone density. I also take low dose steroids & have for some while so obviously another reason for extra protection.

    My hand & knees have become worse this last year but as I'm considered controlled on MTX & my other normal RD meds that is considered to be OA worsening (I was diagnosed with cervical spondylosis at my first consultation (OA of the neck) & last July lumbar spondylosis (allowed back) so it's no surprise that my knees are also affected now. On meds for that too!!

    We seem to have similar issues, I was diagnosed in 2008 so not much different to when you were diagnosed. A big difference though is I started my RD meds within 3 weeks of going to my GP complaining of swollen & painful feet. PM me if you think I could help, I'm more than happy to share any experience I have if you need some pointers. :)

  • I have an appointment with Rheumy on Monday 22nd. Hoping he can help with pain although he always says I'm on the limit of pain meds. I have had bone density scan and am borderline too. On Adcal and awaiting an infusion of calcium. I get a steroid jab now and again but only seems to work on oral pred. At the moment I think I may be in a flare as feeling much worse than usual. I work three days a week with nine month old twins. Dreading this week!! Their mum is around so she does help sometimes

    Any pointers gladly appreciated. Hope everyone is not getting too much pain

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