Second Toe Pain Update: Hi everyone Just thought I... - LUPUS UK

LUPUS UK
26,503 members22,439 posts

Second Toe Pain Update

misty14
misty14

Hi everyone

Just thought I'd update you on my second toe pain. I've .had my new insoles and they make walking more uncomfortable so I've gone back to old ones but love my new trainers!. Going back to podiatry end of September.

I saw my Pain Clinic Consultant who was very helpful but honest as she said it was the wrong kind of pain for her clinic!. It has to be nerve pain to qualify, like wrong leaves on the line!. Ha!. Not so funny when suffering!.

She asked a lot of questions and tested my foot and said I don't have CRPS or one of these weird pain syndromes that can occur after a bone break. That's a relief as it means it's the MPTJOINT and more straightforward, inflammation and the arthritis!. She's asking my GP to rule out gout in a blood test and told me to put a lidocaine patch round the toe for pain relief. It does help but still can't walk without strong pain and it's very swollen!.

She wants to liaise with the Orthapaedic surgeon I'm under as she said they can use nerve blocks to minimise any nerve damage if I have to have an operation!. That has allayed some fears!.

Next plan is to ask my Rheumy as appt coming up if they could do a steroid injection and if not and its the Orthapaedics then I want them written to ,to bring my appt forward!. Does anyone know which it would be?.

The quest for better pain relief goes on. Do take care everyone in this heat and enjoy the Bank Holiday if you can.

MistyX

54 Replies
oldestnewest

Hi misty! Still no real answers , very frustrating for you when you’re in such pain . Has your gp never tested for gout ? My brother- in - law has it and it is so painful 😖. I have had a steroid injection from orthopaedics and at rheumatology clinic , if that’s what is necessary I hope you get it soon , maybe insoles are uncomfortable because of all the swelling. I hope you are coping in the heat and its not making things worse. You’re little friends are still visiting i see 😀. Look after yourself and feel better soon xxxx

misty14
misty14 in reply to weathervane

Hi weathervane

Thanks for your lovely reply. No ,GP hasn't tested me for gout or suggested what it might be!. I do hope your brother in law is better soon as it's so painful!. That's interesting you've had steroid injections from both Rheumy's and Orthapaedics!. They can be so helpful can't they?. Years ago I had them for my hips from Orthapaedics and had such a lot of benefit. I hope you did too from yours. They were your back weren't they?. I'm hoping the Rhrumy's can do it as I see them on the 10/9. I just can't walk now without pain so must do so little otherwise pain so bad !. It's been four months now and it's wearing a bit thin!. I did see my friends today and little walking involved. We had a great catch up and lots of laughs. I hope your having a good bank holiday!. It's a scorcher here , hope your coping in the heat. Take careXx

weathervane
weathervane in reply to misty14

4 months is too long , hopefully you will get something that helps soon . Ive had steroid injections in a variety of joints, in my shoulder, hip and spine , they have all helped, some have helped for long periods. Have you tried icing the toes , my sons shoulder is inflamed and hot at the moment and icing is helping, he did get strapped up by physio and the tape is taking off a layer or skin , had to get spray to dissolve adhesive!!!!!! Take care and enjoy rest of blistering weekend 😀xx

misty14
misty14 in reply to weathervane

Hi weathervane

Thanks for your lovely , helpful message. Sorry about your son's shoulder and strapping irritating the skin!.Mum to the rescue !. Glad the ice is helping.is he due one of his appts soon?. Do hope it's better soon. I've been doing the same with ice and it helps my inflamed feet and the toe. I shoukd get the pain clinic letter this week so I can talk to my GP. We've got a bank holiday tomorrow which always delays things!. Have you?. Do hope you've not melted in the heat. Slightly cooler here today luckily. Take care too. Xx

weathervane
weathervane in reply to misty14

Thanks misty. I got spray today in the chemist that was amazing, got all the strapping off with out further damage. Hes hoping to work tomorrow, though shoulder has been painful, rheumy putting off injection but I think he’s going to need one ☹️ Its hard for him as may have to reduce his hours . Glad the ice is helping you as well and gives some relief, im sure the pain clinic can’t come quick enough, best wishes for that , 🤞🏻 . I don’t think we are just as hot as you , but hot enough, too warm to do much ! Take care , keep your updates coming xxxx

misty14
misty14 in reply to weathervane

Thanks weathervane for your lovely message. Good luck for your son's shoulder injection that it looks as if he'll have to have!. Could help him greatly and it's tough when it affects work!. TAKE CARE and keep us posted too. Xx

misty14
misty14 in reply to weathervane

Hi weathervane, thank goodness it's not as bad as last time!. Hope you'll be much better for your hols. You kindly said to keep updating about my toe!. I've had worsening pain since sat so went to A&E this am and was kindly told by a nurse practitioner that they couldn't help as it was an ongoing problem. I must get GP to do an urgent referral to Orthapaedic surgeons who can do injections or the op!. Took them 2 hrs to tell me this and I've wasted a morning!. Also they didn't want to add anything else pain relief wise because I'm on so much serious drugs!. I'm going to be in touch with GP tomorrow now. Fed up with it all to be honest!. It's been a long time which she did acknowledge which was nice!. TAKE CARE and feel better soon. Xx

weathervane
weathervane in reply to misty14

Oh misty, so frustrating for you, 🤞🏻Your orthopaedic referral will be fast tracked as you are in so much pain . Good luck with gp tomorrow best wishes xxx

misty14
misty14 in reply to weathervane

Thanks very much weathervane. Good luck with your GP too. Fingers crossed . Xx

misty14
misty14 in reply to weathervane

Hope you don't mind weathervane me answering you in my toe update feed?. I'm fuming to be honest as no progress made!. My pain clinic letter hasn't arrived so no bloods!. Wil chase it tomorrow.

No report from A&E to GP because they can't access them on the new computer system at GP surgery. All last week I've been on the phone between GP surgery and A&E to sort it out. Latest call Fridsy I got A&E to send it to GP in the post which they were very willing to do!. No guarantee though that it's there Monday when I ring GP surgery again!. It will be a week soon and no further forward!. I can't believe the precious days ive wasted thru this and can't walk without severe pain now!. Fingers crossed tomorrow I get a breakthru. Hope your having a good weekend. Xx

weathervane
weathervane in reply to misty14

Oh misty, that’s not good . Do you have a walking stick or crutches to help you get about ? I had to use crutches when I slipped a disc and I couldn’t have managed without them . I will keep everything crossed for you tomorrow that you can make some progress xxxx

misty14
misty14 in reply to weathervane

Thanks so much weathervane, I normally walk with a stick . Will let you know if breakthru comes tomorrow. Have a lovely Hol. Xx

weathervane
weathervane in reply to misty14

😀😀

misty14
misty14 in reply to weathervane

😍😍Xx

misty14
misty14 in reply to weathervane

Hi weathervane, just to let you know A&E report was there and I've got an appt to see my GP on weds afternoon to discuss it all!. The receptionist read thru it and said they'd put GP to review at the end!. I'm a bit suspicious there was no mention of a quick referral to Orthapaedics!. We'll see!. Do hope your feeling better and the packing is going well. Big job!. Thanks for your support. Xx

weathervane
weathervane in reply to misty14

Good luck with Wednesday, everything moves so slowly, very frustrating for you xxx

misty14
misty14 in reply to weathervane

Thanks so much weathervane. Will you be on hols then?. It just seems never ending . Have a lovely timeXx

weathervane
weathervane in reply to misty14

Holidays start on Thursday can’t wait as has got quite cold here in evenings, had to put on my autumn quilt 🙄

Take care , don’t let it get you down xxx

misty14
misty14 in reply to weathervane

Just to let you know I've got go ahead from GP to contact the Orthapaedic surgeon to bring appt forward. Happy hols weathervane. Bring some sunshine back and have a lovely time. Xx

KayHimm
KayHimm in reply to misty14

🎉 🎈 🎊 such good news, Misty. You have calmly tolerated enough. Better days ahead!

Xk

weathervane
weathervane in reply to misty14

Really pleased for you misty! Hope you get to see someone ASAP 😀I will try and capture a bit of sunshine and bring it back with me 🌞. Rest up and take care xxxx

misty14
misty14 in reply to weathervane

Hi weathervane

Hope you've had a lovely Holidsy, lots of sun and relaxation. Hope your much better. I've managed to get an appt with Orthapaedic surgeon on 26/9. Not too long to wait. TAKE CAREXx

weathervane
weathervane in reply to misty14

Good news about appointment, I hope the time doesn’t drag on you until then. Arrived a few hours ago , very early flight so have sorted things out and going to have a snooze now as flagging badly 😴

Take care and put your feet up as well xxxx

misty14
misty14 in reply to weathervane

Have a lovely time weathervane. Rest up too. Xx

misty14
misty14 in reply to weathervane

Hi weathervane, I do hope you've had a great holiday, lots of relaxation and rest and you feel much better.

Just another update in this toe saga!. I saw my Rheumy who was tougher this time!. No steroid injection for toe, they don't think it's appropriate treatment!. Adamant about me reducing the steroids because of the fractures and reckons toe problem has been caused by them .He said I must see the Orthapaedic surgeon for info on op so looks like I have no choice to have it. Makes any decision easier I guess!. I must stay on Hydroxy every other day as well so it will take longer to build!. I'm in no hurry st the mo to go to 5 mg as too inflammatory and had an outing today which has done my spirits good!. That's important too rather than being stuck at home!. They have no idea what it's like!. Recover my dear and take care.Xx

P.s next instalment after the 26 th if you can stand it!. Ha!. 😊

weathervane
weathervane in reply to misty14

Hi misty, had a lovely relaxing holiday though did get hit by the storms with flooding and thunder and lightning, thankfully our apartment and journey home was fine . Your appointment was a disappointment im sure as you are not really any further forward. I hope you see orthopaedics soon and get some real help . Its great you got out and enjoyed yourself that is so important but difficult im sure . Best wishes and hugs, look after yourself xxx

misty14
misty14 in reply to weathervane

Hi weathervane

Do hope your son is better and back on MTX with no flare or infection now!. Hope your well too.

Just to let you know I've just had a much better appt with the Orthapaedic registrar for this toe. He explained a lot and it's been caused by the arthritis not the metatarsals I broke earlier this year!. They could do a steroid injection for two months help or an operation to fuse the joint and stop the pain. He said he would talk to the Orthapaedic surgeon he works for and they'll make a decision!. He thinks op is best. Problem is the waiting list, 2-6 months but there's a separate urgent list and helps if I can say I can go at short notice which I can!. It's a ten minute op would you believe that could revolutionise me and still so much waiting for people!. Seems so awful!.

I'm also going to ring the Rheumy nurses and ask if I can increase Hydroxy dose as reduced to 5 mg steroids and arthritis not good!. Hope you have a good weekend. Xx

weathervane
weathervane in reply to misty14

Hi misty, thanks for thinking about my son 😀, hes not really back to himself yet , still tired an sore . He’s just finished antibiotics and waiting for gp to get letter from rheumatology about steroid injection, hopefully will be next week.

You seem to be making some progress towards treatment, it is such a slow process. What type of op will they do to your toes , and what is the recovery time . You have had a really awful time , i have some idea what you are going through as i was grounded for months when I slipped a disc , it’s very isolating. I am crossing my fingers for you that you get put on the urgent , urgent list , take care xxxx

misty14
misty14 in reply to weathervane

Thanks so much weathervane for your lovely reply. I'm sorry your son is still recovering and not feeling great yet!. These things take it out of us so I hope he hears from Rheumy next week about that shoulder injection!. Been a long time. I do remember you being so stuck when you slipped a disc!. It's awful when normal life stops. We did tell the registrar how curtailed I am and your right though it's such a slow process getting sorted!. He said I'd have another appt to see the surgeon and sign the consent form and I'll be able to ask any questions then. I don't know how long recovery is or whether I go back into a boot as its a joint fusion op!. I've written these q's down!. I'm really missing my voluntary job and going shopping!. I've been curtailed this year from end Feb when I broke my feet and I can write this year off now, hope to be done by Xmas!. It's tough!. I'll let you know when their clinic letter comes and you keep me posted about your son's injection. Fingers tightly crossed and take careXx

weathervane
weathervane in reply to misty14

Hopefully you will get a cancellation and get an earlier appointment, will you be doing your xmas shopping on line this year? After i had my surgery i was constantly amazed at things i was able to do that i hadn’t been able to for so long. My son is getting a general steroid injection 🤞🏻, they still haven’t decided what to do about his shoulder, appointment on the 9th of October.

Do look after yourself and take vitamins etc to boost your health prior to surgery, best wishes, look forward to your updates xxxx🌸🌸

misty14
misty14 in reply to weathervane

Thanks so much weathervane, tough they haven't decided what to do about your son's shoulder. Not too long for his appt, glad he's getting a general steroid injection. Is that before his appt or then?. Do hope he feels better soon. He must feel so frustrated!.

I may not do Xmas this year it depends where I'm at!. Do you do a lot of online shopping?. It's such a boon for us?. You must have needed it for your recovery!. How long did you take to recover from your back surgery?.

Bit of good news, my Rheumy has agreed to me taking 300 mg of Hydroxy every other day so I'm hoping to be better!. So lucky to get it all sorted today when I left the message!.

A friend tomorrow is picking me up, minimal walking and we're having lunch out and a big catch up!. So looking forward to a laugh and think about something else.

Hope you have a good weekend and I'll take your advice. Take careXx

weathervane
weathervane in reply to misty14

Misty im great at giving advice but I don’t always follow it 🙄🙄. I didn’t do on line shopping as im just not well enough organised. When i was hobbling round on crutches I still went out and did shopping, with help of one of my sons or husband, and it was a struggle but it was good to get out , lots of coffee stops 😀😀

I hope the increased hydroxy will help , ive been taken of it because of low wbc but I don’t think it was the hydroxy as still low . To tell the truth I didn’t notice a difference when i came off it either. Hope you’re get the eye checks , my son is going for his this week.

Best wishes and look after yourself xxx

misty14
misty14 in reply to weathervane

Hi weathervane, your lovely message made me smile. You did well hobbling about on crutches but I agree with you about it being so good to get out!. Sorry your wbc is low again, does keep happening doesn't it?. More likely to be the rituximab I would have thought!. I do hope your son gets his steroid injection and his eye check is good on hydroxyl!. Is he managing to go to work?. I'm getting my eye checks ok thanks.

I've got the added bonus that the splinting for my toe that the registrar recommended called 'Buddy Taping' is helping the pain a lot. it means the op will work as its immobilising the joint which stops the pain just as he said. Also will help my waiting time!. Just wish I'd been told of it sooner!.

Keep me posted how you both get on and take careXx.

weathervane
weathervane in reply to misty14

Great news about your toes !!! Sometimes simple things do help , hopefully you will get a cancellation soon 😀. My son isn’t able to work at the moment, if he could get this under control he is going to look for a less physically demanding job and still no word about the injection 😡. You take care , will chat again soon xxx

misty14
misty14 in reply to weathervane

Hi weathervane

Thanks for your lovely message. I didn't think your son could be working thru all this. Its hard trying to make your way in life and be ill. Sounds like a good plan he's got. If you don't hear about that injection then chase it as Rheumy's are tough as I know and will let things go because their so busy!.

I'm waiting for the clinic letter to know what treatment has been decided. Should get it by Sat I should think. Hope your wbc improves. Take care too. Best wishes Xx

weathervane
weathervane in reply to misty14

Thanks misty, just heard back from rheumy nurse, the letter was on electronic system so receptionist wont have access so will ask to speak to gp in the morning. Good luck with letter on Saturday, it’s always a wait 🙄xxx

misty14
misty14 in reply to weathervane

Hope weathervane you've been able to speak to your GP and get your son an injection appt!. I'll keep you posted when my letter comes!. Xx

weathervane
weathervane in reply to misty14

Hi misty, finally got the steroid injection sorted for my son , getting it on Monday- finally !!!

🤞🏻🤞🏻You will get the letter tomorrow and we will both be sorted , for now 🙄. Have a lovely weekend xxxx

misty14
misty14 in reply to weathervane

Hi weathervane, well done for sorting the steroid injection for your son and glad he gets it on Monday!. Do hope it helps. Keep me posted.

I've just had the clinic letter from the registrar I saw and it's ruined my weekend.!. It's not so clear cut as to what's best for this toe . The Orthapaedic surgeon isn't sure if it's my broken metatarsals or the arthritis that's causing it and still feels it could settle given more time!. He says he'll see me in his clinic but doesn't say when and no steroid injection!. If no appt comes in three weeks I'm going to ring and chase it. I'm also going to have to ask about more pain relief as its so painful walking when I see my GP on Tuesday!. Feel so let down but I can understand what he's saying and just have to be grateful there not discharging me!. Take care and have a good weekend. Xx

weathervane
weathervane in reply to misty14

Ooooh misty ! That’s very disappointing for you , surely you have been in pain for long enough without any improvement. Stronger pain killers all have side effects long term , though i took tramadol for quite a while for my back and i was able to stop it gradually without problems, but i do tolerate drugs quite well.

Don’t get down about though, try and enjoy your weekend, get some chocolate and a good movie and treat yourself a wee bit , lots of hugs and best wishes xxxx

misty14
misty14 in reply to weathervane

Funnily enough I bought some chocolate today weathervane as I had my weekly outing to Sainsbury's!. I must have known!. I'm already on a 5 mcg morphine patch for it and I'm like you I can come off these drugs with no withdrawal problems . I just hope they don't leave it too long sending an appt. Thanks for your lovely messages. Big hug and a good weekend for you. Xx

weathervane
weathervane in reply to misty14

😀😀

misty14
misty14 in reply to weathervane

😍💕😍

weathervane
weathervane in reply to misty14

Hi misty, hope you had a good weekend and enjoyed the chocolate 😋. Wanted to let you know my son got his steroid injection this morning, all went ok , he was expecting a huge needle 🙄. Im also off to gp later , still feeling ugh , maybe will get antibiotics and all will be well 🤞🏻🤞🏻🤞🏻

misty14
misty14 in reply to weathervane

Hi weathervane

I was about to message you !. So glad your son had his injection and I hope it helps him a lot!. Good luck for the GP later. Hope no camera tests but if you do it's the prep that's the worst , the actual test is done kindly by the staff!. In case it's diverticulitis you might want to try cutting out anything with seeds as they can be a trigger. Tomatoes , sweet corn and bread with seeds!. My mum has it and it's not nice when it flares. Hope your feeling better. I've just had a breakthru with my toe. Phoned the hospital appts dept and the Orthapaedic surgeon has given me an open appt!. I m about to ring his secretary to see when I can have one!. Just proves if your not sure to ask!. The registrar's letter didn't mention it!. Thinking of you. Let me know how you get on. Xx

weathervane
weathervane in reply to misty14

That’s fabulous news about your appointment, I hope it will soon as possible!! I am eating very little at the moment, though camomile tea helps, I will chat diet with the gp as well . Good luck with all xxx

weathervane
weathervane in reply to misty14

Just back from gp armed with antibiotics and anti nausea pills . Urgent referral also made to gastro probably for the camera 😫. She thought its probably diverticulitis but needs to be sure , also need to consider Foodmap so google is required , involves cutting back sugars 😫😫. Im visiting my son in Holland in a couple of weeks and I would hate to have an episode there . Hopefully we will be be seen by consultants ASAP , take care xxx

misty14
misty14 in reply to weathervane

Oh weathervane, I thought she would refer you for the camera test as they have to be sure what they're treating!. Do hope the treatment helps for your trip to Holland. Couldn't be worse timing for you!. Do hope your other son is feeling better!. I hope your sitting down. I've got an appt to see the Orthapaedic surgeon on Jan 9 th!. The secretary said she'd put me on cancellation list and tell her colleague to see if it could be brought forward!. I suppose it's not bad as our lives are going by quickly !. I'm going to ask my pain Consuktant about further pain relief next week!. Good luck with the Fodmap diet as its quite tough to do. Hope you feel better soon. Take careXx

weathervane
weathervane in reply to misty14

Hi misty , i had hoped you would have an earlier appointment than that , 🤞🏻🤞🏻for a cancellation. Good luck with with pain consultant hopefully they will find something to give you relief, are you able to sleep at night??

I had a bad day today with a terrible headache and nausea, slept all afternoon and felt abit better . Don’t know if its the antibiotics or cutting out foods and only eating toast , it was like a migraine which I haven’t had for years . Going with my son to dermatologist first thing tomorrow so I need to feel better ☹️☹️

Look after yourself and will let you know how he gets on xxx

panda2
panda2 in reply to misty14

We're all crossed; and we're all CROSS for you, Misty! It's abominable non-treatment! Every thought wave coming your way for that breatkthru tomorrow (good term!). Time for breakthrus!

P xx

misty14
misty14 in reply to panda2

Thanks so much panda, do appreciate it. Will let you know. It really is time for breakthru S!. Xx

Hi misty I’m the same it’s both my second toes, i put toe socks( that what I call them) on that toe and soles off hospital helps just got to make yself comfortable

misty14
misty14 in reply to Georgiab123

Hi Georgia

So sorry you have it in both second toes. That must be very hard to cope with!. My pain just keeps worsening despite trying lots of things so it's hard getting comfortable!. Glad you can. Xx

Georgiab123
Georgiab123 in reply to misty14

It’s just part of the condition got to do our best it still pains at times I find soft shoes help

You may also like...