What’s wrong with my big toes, GP has no idea

[JulietteHasAGun]

I have had very bad pain in both big toes for a number of weeks now (over a month, probably 6-7 weeks). Right toe is worse than my left toe. Toes look normal, no swelling, no redness, no discharge. Right toe is agony, left toe is sore.

It started after I’d been for a 4 mile walk in some hiking boots I’d not worn for a bit and I thought maybe it was the boots…..but I’ve had this boots for a decade and never had this problem before. 4 miles isn’t an unusual distance for me to walk, but I haven’t worn those boots in a year.

pain seems to be in the joint and hurts even if I try and push the duvet up at night with my toe. For the first week or two i couldn’t sleep on my front as if the top of my toes was on the mattress it hurt too much. I thought it was getting better for a while but seems to be back to early days again and I haven’t worn the boots since. If I crunch my toes up it hurts. Just went to push the hoover forward with my foot and screamed in agony due to explosion of pain in my toe. It hurts when I walk when I’m pushing off my foot.

i thought it might be gout but the GP said no and declared I had an infection in my toe nails …..no visible sign of infection but guess no visible sign of gout either. Prescribed me antibiotics which haven’t worked.

I have been trying to make another GP appointment and they said I’m on a waiting list for another appointment but that it’ll be a six week wait. 🤷‍♀️. 😡

Any ideas? I’m 50. Can you get arthritis just in your big toes?

If you see a podiatrist, make sure it's one that has an ultrasound machine. I'm first went to one that didnt, she was more of a chiropodist and totally misdiagnosed my gait and the problem. The other podiatrist had a good ultrasound machine, and asked me to take in walking shoes to examine where the wear was.

I had big toe joint pain I think it was due to shoes although they felt OK, stopped using those shoes and it gradually resolved.

Stress fracture?

One thing I have learned is there are rheumatologists and rheumatologists. It was blatantly obvious I had some form of inflammatory arthritis but I couldn’t get referred on the NHS. It took 2 private consultants to finally get diagnosed, ironically I used to work in a rheumatology department on a research project. I was told there was no inflammation in my SI joint, next consultant looked at MRI and said although no active inflammation it showed there had been.

Unfortunately due to the delay in diagnosis my arthritis is very active and I am not really responding to meds, fingers crossed for number 4.

You have a family history of autoimmune disease and menopause is often a trigger. If you can I would consider finding a good private rheumatologist at this point and wouldn’t trust what you have been told by the one you saw,

How long did it take. I’ve been a good few weeks since I wore the boots.

Couldn’t make this evening up. I trotted off to the new drop in X-ray centre this evening. They have my electronic referral which talks in the clinical notes about both big toes being painful but in the drop down boxes GP had selected left foot and right femur.

so they refused to X-ray my right foot.

they said they’d do my left. I said no, I wasn’t having half a job done. They said they can only do what’s been selected. At which point I said well X-ray my right femur. They also wouldn’t do that as they said they thought the gp had selected that accidentally. No shit. No common sense. They couldn’t see the irony of refusing to X-ray one as it hadn’t been selected and also refusing to X-ray the one which had been selected because they didn’t think it was right

I was tempted to have a sit in in the X-ray room and refuse to leave. 😆

@Seaitoverthere it was a private one I saw. No idea if she’s good or not, her website said she had an interest in AS.

I can’t face paying someone else and trying again. I think my GP would feel I’m trying to pay for a diagnosis or something

Have they ruled out rheumatoid arthritis? I only ask as I read recently about it being symmetrical.

This sounds like exactly the symptoms I had with arthritis in the big toe. GP advice was to wear trainers . Eventually had to have the joint fused when the pain became unbearable. Had to go private for that as my GP insists they can’t offer any treatment for arthritis.

That’s awful that the nhs wouldn’t do it. Will an X-ray show arthritis up?

Have you been tested for gout?

They did an ANA (?} blood test for that a couple of years ago which was negative

No. GP said today with no redness or swelling she doesn’t think it’s gout.

I have arthritic big toes and they can be very painful. I have insoles which take some the pressure off and spread it across the smaller toes.

Could be palindromic arthritis. I know someone who had similar problems in their thumb joints but it did eventually settle down. I hope you get answers soon

Yes an xray will show it.

I had agonizing toe pain… first time I noticed it was when bending toes to get into ski boots. Long story short it was arthritis and I had an op to sort it. Partial cheilectomy. The pain has gone and I’m pretty happy. I have a thread on this under a different name.

I am genuinely feeling a bit depressed about the thought of it being arthritis. I spent 4 years struggling to walk due to my ankle tendons, not helped by my surgery being scheduled for the day before lockdown and was obviously cancelled and then cancelled another 3 x over the next couple of years.

Only felt ok the last year and now this.

I had gout but my toe was red and shiny. The pain was excruciating. I thought I had it again this year but it was in both toes and it was actually chilblains which was I believe made worse or caused by ADHD stimulant meds.

I thought I had chillblains at Xmas time. Never had them before but had very itchy painful toes , but that was more superficial. Then it got better. Now the pain seems deep in the joint.

That sounds really painful, especially having to go through surgery in the end. I appreciate you sharing your experience, it helps put things into perspective.

Mine were not itchy at all which makes me think reading your post that maybe it was arthritis! I recently got diagnosed with osteoarthritis in my hands at age 49 when I broke a bone spur from the arthritis and that was the most incredible intense pain when I did a pinch movement.

orthotist.

I read that as you need an orthodontist at first!

Foot and mouth disease!
ETA sorry not sure OP except that I might have wondered about arthritis.

@JulietteHasAGun I feel your frustration re lack of commonsense - it's so rules driven now.

I have sero negative rheumatoid arthritis - no diagnosis for a decade as blood tests never showed anything. My knee x rays did show changes that an orthopaedic consultant spotted straight away ( I saw him privately as was off work unable to walk!)

Keep going till you find out what's wrong. Best £100 I spent seeing that doctor. I then had steroid injected into the joint which helped a lot. I'm on methotrexate now; which has been a game changer.