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Original poster

What's wrong with my toes? Any ideas would be greatly appreciated. Photos included.

49 replies

Suchafunnystory · 08/04/2015 13:36

It started last summer and all the doctors (GP) I saw seemed to have different opinions on them.

During the warm months they are very itchy and inflamed, if I wear flip flops and the sun heat is on them for a few seconds the pain will start with a vengeance. During the winter months they are better but still slightly swollen but no pain. I used to have straight toes but not any more! :(

The doctors have said maybe Raynauds or chilblains.

I've been reading online and neither seem to fit correctly with my symptoms.

My kidney function is fine, had X-ray last year and that was fine too.

Any ideas?

OP posts:
MrsFlannel · 08/04/2015 16:24

Some auto immune disorders make toes go "wrong" in this way.Lupus is one of them. I'm not a doctor of course....but I'm surprised they didn't test you...have you any other issues? Skin ok on your face? Joints ache?

AuntieDee · 08/04/2015 16:26

It's not hot is it and 'prickly'? Could be gout?

Mrsmorton · 08/04/2015 16:31

No idea but your floor is lovely.

favouritewasteoftime · 08/04/2015 16:41

Agree with the autoimmune disorder suggestion. Could also be arthrosis - I know someone with this diagnosis and their toes and fingers are similar to your photos.

favouritewasteoftime · 08/04/2015 16:42

I also agree that you have a nice floor!

Loyse · 08/04/2015 16:44

Your nail beds look quite blue/ purple on the pictures. That doesn't look normal.

Original poster
Suchafunnystory · 08/04/2015 17:01

Skin is ok on my face but over the last 3-4 weeks it become a bit dry and I have very light dry patches...never had this before. My joints have been aching but are ok at the moment. I'm constantly tired and last month the Dr said that I probarly have chronic fatigue and started me on a low dose of medication for it.

My kidney levels haven't been right for over a year now but the last lot of bloods came back fine from last week.

From just having a quick look this does show some of the lupus symptoms.

They are not hot but are very prickly/itchy and slightly numb when you touch them.

Im going for X-ray and bloods tomorrow to check my uric acid, had it done several times before and sure it will be normal again.

My nail beds always look that colour! Shock

Looking back I've always had a bit of an issue with my toes, remember being tested for gout 10+ years ago.

OP posts:
Original poster
Suchafunnystory · 08/04/2015 17:04

Thank you for the compliments regarding the floor, it's over quadruple my age. Smile

OP posts:
ImperialBlether · 08/04/2015 17:17

It's not arthritis is it? It reminds me of psoriatic arthritis which can affect the fingers and/or the toes. Could the dry patches you have be psoriasis? I have this type of arthritis and although I have once or twice had a patch of psoriasis the size of a 2p coin, the rest of the time I've just very occasionally had a tiny dry patch (half a 5p coin size), so very untypical of psoriasis.

Cocolepew · 08/04/2015 17:20

My guess would have been auto immune as well, Raynards or Lupus.

Cocolepew · 08/04/2015 17:23

Raynauds is connected to Lupus and also Sjorgrens Syndrome.

Original poster
Suchafunnystory · 08/04/2015 17:35

My DH is just reminding me that I did have a lot of blood tests done last summer on several occasions and everything came back fine...except kidney function. I'm sure I posted about my results, I will try and find it to see if there might be a connection. I just hope I was tested for Lupus at the time and all came back fine. I didn't have an urine test though just bloods.

My DD has an autoimmune disease, so there might be a connection and I could have passed something on.

imperial just googled and one photo was very similar to my toes. The dry skin is very light and I don't think anyone would notice to look at me, but it there. I have been blaming it on our house move to a top of a mountain as it's colder up here.

OP posts:
Original poster
Suchafunnystory · 08/04/2015 17:36

Would it be really noticeable on my face if I had lupus?

OP posts:
MrsFlannel · 08/04/2015 17:51

Not always. My sister has Lupus and doesn't have the butterfly rash.

Original poster
Suchafunnystory · 08/04/2015 17:59

mrsflannel does your sister have any type of rashes etc? Does she cope ok?

It was my ALT level that come back high last year, it was up in the 70s and 80s.

Flowers thank you all for your input and suggestions. I finally feel like I'm getting somewhere. I will not let this rest until I have an answer and a diagnosis if there is one.

OP posts:
Cocolepew · 08/04/2015 18:11

I have Lupus and the rash comes and goes on my face . If I'm starting a flare I just look very healthy Grin with lovely flushed cheeks.
One thing, Lupus isn't always diagnosed on blood tests.
I get small, very dry patches of skin, mainly on my hands, legs and arms.

Original poster
Suchafunnystory · 08/04/2015 18:14

coco thank you for your reply. How did they diagnose it with you?

OP posts:
AuntieDee · 08/04/2015 18:16

Also there are two types of Lupus so make sure your doctor is testing for the right one - you need to be tested for Lupus Erythramatosus, not Lupus. The Lupus screen is for Lupus anticoagulant and involves taking about 4 bottles (usually green or blue) - you need them to be taking an ocre coloured sample.

I work in a lab and we have to reject about 50% of the Lupus screens as the request the wrong thing or send the wrong bottle.

If your uric acid is OK you can pretty much discount gout :)

MrsFlannel · 08/04/2015 18:19

Funny my sister is fine. She has the kind of Lupus which can affect vital organs but thanks to excelllent care she is doing so well. She used to get very tired when they were trying to balance her drugs but now she's absolutely great. She's 50 and busy and happy.

Original poster
Suchafunnystory · 08/04/2015 18:29

auntiedee thank you for your reply. Sorry silly question but ocre coloured sample will be for blood test? Not urine? My bloods are done at the hospital so hopefully they will know, but I will know even if they don't. Grin

mrs nice to hear that. Thanks.

I'm just constantly shattered although I do have under active thyroid the medication I'm on 125 thyroxine isn't making any difference.

I'm suppose to go back to see the doctor in a months time, if I make an appointment I will have to wait 2-3 weeks. Does this warrant an emergency appointment tomorrow morning?

OP posts:
Cocolepew · 08/04/2015 19:55

Mine was diagnosed on symptons. You should ask for a rheumatology referreal.

Original poster
Suchafunnystory · 08/04/2015 20:05

Thank you, I will ask for a referral. I think I'm going to go back tomorrow...as an emergency! Not sure if it's the right thing to do but want it sorted ASAP.

OP posts:
RawCoconutMacaroon · 08/04/2015 20:11

Op that's a lot of autoimmune flags you have, and now you mention thyroid... Have you had thyroid antibody tests? That might be a good idea too!

Unfortunately autoimmune conditions often seem to be "buy one, get several others free" iykwim.

MrsFlannel · 08/04/2015 20:25

what counts as autoimmune flags please coconut? I have a facial rash which made the GP do a lot of tests. I also had a lung xray...all clear. I had two biopsies on my face too....

AuntieDee · 08/04/2015 21:15

The ocre sample is blood not urine. It's the standard biochemistry tube but is also used for immunology x