Feet swelling..

[LauraMk30]

Hi guys & girls,

I know the weather in the U.K. Has been somewhat HOT!! I am enjoying the mini heatwave. My wonderful boyfriend took me on a day out to westen super mare on Saturday. It was 34 degrees! I wasn't feeling to good but I pushed passed it as I didn't want to ruin our day by being poorly.. we haven't had any quality time away for ages so we cherished the moment.. anyway

Apart from the obvious normal symptoms, I felt something odd in my foot.. I wasn't sure if it was all the walking we did as we did walk for miles.

The feeling I got was pain my foot,

Dragging feeling, like my foot wasn't my own. It was like pins & needles but worse & I felt like I was loosing the feeling of it. The veins on the top were very visible & swollen. I couldn't walk at one point & elevated my leg.

It just seemed very strange to me, we ended up walking back along the beach & we started to sink.. OH MY GOSH !! The lifeguards came over to say that it was dangerous as the tide had been out all day & we were at risk of sinking to our waist in clay !! I did go pale & panicked a little but even then my foot felt odd..

Gosh I'm babbling, got back to the car. My boyfriend looked like a lobster, I wanted to scream out loud in pain with my legs but I didn't. But i managed to get the clay off, noticing white blotches all over my feet, & reddy purple areas of skin.

The soles of my feet are blistered I think that's from the walking, we got there at 1.30 & left at 9pm so you can imagine how many miles 🚶🏼‍♀️

So swollen feet & ankles

Heavy feeling

White blotched & purple red areas on skin

Dead foot.. is the only way I can describe it & just plain painful

Any suggestions or advice would be lovely x

[Barnclown]

Sorry you're dealing with this...it's awful...I have a version with v similar signs & symptoms....have been coping with it for many years...no picnic. My primaries are infant onset systemic lupus + Ehlers Danlos hypermobility, but my secondaries include small cell vasculitis + sjogrens + simultaneous raynauds & erythromelalgia + a bunch of other typical immune dysfunction & connective tissue disorder diagnoses

So am glad you posted and will follow the replies with interest

🍀🍀🍀🍀 coco

[LauraMk30 in reply to Barnclown]

Hey barnclown/Coco

I've never experienced this before so it's very new to me. Wow.. that's quite a lot of conditions to swallow! Crikey. I will have to research them & educate myself & get a better understanding of what your going through.. must be so hard for you.. if you can keep going so can I.. 💪🏼 HEDS im most familiar with. As I am a sufferer. Thanks for taking time out to comment x

[Skipper55]

The problem with your feet could be a result of many things you need to have tests carried out urgently to discard the serious issues such as clots etc , of a result of a bigger issue that is starting and is probably in the family of vascolitis . I started with that problem then balance and 3 years later our countries no 1 immulogist came up with the diagnosis of Churg Strauss Sundrome. I have been on and still on a a ton of medications and 5 puffers and various anti infamatory,drugs . I also take a viatmin drug called curcumin ,it has been a miracle find , the swelling in my feet after 4 weeks was reversed to nil , I now have almost full feeling , every day it is a little better , the dead skin that I would cut off each week and also every 12 weeks by the podiatrist , I no longer do and instead of him taking 1/2 hour to cut it away it is now 10minutes . He agrees that curcumin has been the answer . On the 26th of June I see all my specialists ie immune , lung , heart , vascolitis , kidney and I will see what they say. But ourvState government sent out a letter to all 60 plus year olds to tell us the benefits of turmeric the food that curcumin is found in and it's benefits , that was only 2 weeks ago , I doubt they would have done something like that unless there was over whelming evidence.

You need first up to define the problem it could be very serious ,the above is a great find but you need to know what you are dealing with.

[LauraMk30 in reply to Skipper55]

Hey skipper,

I've been taken off my blood thinners due to a previous clot.

Couldn't find it on a Doppler scan as it had been dispersed so they assumed I didn't need the medication anymore & it had gone, 4 weeks ago I was admitted for the 2nd time for a clot possible PE.

I'm due to see a specialist in a few days that I'm very happy and relived about as my symptoms are on show and i couldn't think of a better time to have an app.

I've just taken some photos. The left leg is the previous clot leg. & My foot this morning is very swollen & I have purple toes.

I've tried to place my feet on the floor but the cushion of my foot is swollen so the toes have raised off the floor.

I have some podiatry issues that I need to sort out too. But I've just put it down to the wrong shoe, or just plain & simple walking that seems to make me swell.

Your skin sounds somewhat like mine. Over the years my feet have had episodes of peeling skin. But it leaves raw areas so I can't put my foot down at times.

I'm so glad you have an app to see your specialists too. Mine is on the 23rd June.. I've waited since last Christmas.. but it's been a long 7 years+

I've heard about turmeric..

My problems at the moment is my intestine.. & spleen, & heart.

Can't wait to get myself on an even path.

Please keep me posted on how you get on I would like to know. ⭐️❤️

[Skipper55 in reply to LauraMk30]

For your gut I live by aloe Vera juice I only drink the American arizona desert stuff prepared by forever living Co they would be in a city near you , anyway it goes back to Cleopatra and its used today for sunburn and swelling . I was diagnosed with Crohns Disease 30 years ago , I had 2 round of gut surgery under horrific conditions , weighing in at 42kg after 6 months in hospital and 100mg of steroids per day by drip then surgery was set for 7 days then 2 days before a get a clot full length of my leg so surgery was cancelled then 3 days later my gut blew open and I was on blood thinners so it was emergency , anyway the champion surgeon did a 12 hour job took out my large bowel but could only do 1/2 the job I had bowel coming out my chest ,rear end , then 6 months after he had another go to finish the job another 12 hours so I get Staff infection , in hospital for another 6 months but the disease kept coming back as well and I am no well into the ilium ,that's bad ,son born on same night as first surgery ,so I am in a lot of pain with Crohn's and this lady puts the aloe Vera in the fridge the forever living stuff I has contact from 6 people on it and they all had different gut problems but they swear by aloe Vera and within 3 weeks the pain started to drop and my energy and overall well being just kept on getting better so I live by it I have an ilostomy and no gut problems since , to many people have been cured by it , the situation was far worse than what I described it made lancet the medical journal ,and the drugs did damage as the next to children were born requiring life saving surgery ,it's acknowledged and that trial drug got the red light . So after all that give aloe Vera a go and see if it does the job all the best with the Docs on the 23rd I look forward to some good news

[LauraMk30 in reply to Skipper55]

Thanks skipper,

Wow I didn't know you could drink Aloe Vera! I use it on my hair & skin, but never thought you could drink it! You learn something new everyday !

Wow..... omg! Seriously you have been through the mill! Jeez.. & giving birth !! I take my hat off to you miss ! Despite the terrible circumstances your an inspiration! I'm

Struggling with my gut.. only of late. I've had G.E.R.D for years but I've managed to get it under control.

Umm it all started 4 weeks ago when my partner made me a surprise meal. Amazing but there was sting in the tail.. lol

I struggled with swallowing during the meal, acid was phenomenal.. stomach was on fire !! Boyfriend said "it's got a kick hasn't it my love.." I said ummm yeah my throats closing!!! Surprise SCOTCH BONNET baby! He knows I struggle with a mild curry... but a 350,000 seriously hot chilli! The pain was immense & I tried not to panic... tried.

4 days later I felt really sick, felt like a fireball in my stomach, crippled in pain I rang my doctor, an appointment was made for the next day but I couldn't go. Every time I drank fluids I'd be sick. Every time I tried little bites of food I was sick. It was like bile.. but so painful when vomiting. So I struggled through it for a week, sipping water. Not eating.

My dads birthday we went out for a meal.. I sat there through out not eating.

Towards the end I nibbled on a dry bread roll. Exhausted. Weak.. pain was terrible.

A few days went by I was ravenous !

But this burn was unlike any gastric reflux I've ever had. I had a raw throat, sore tongue centre of my chest was like wildfire began feeling like I had a cold coming, curled up in bed, sweating, wondering if I had burnt my stomach lining.. or something..

I've become a custom to it now but jeez it's been unreal my boyfriend feels terrible but I said.. I think in my condition that was the worst surprise you've ever given me!

Once food has digested. My stomach burns, the most pain I have is under my left rib cage.. & down a little. I'm ok if I don't eat but you have to eat to live.

I might give aloe vera a go...

Thank you so much for commenting & telling me about it & sharing your story with me.

I can't begin to imagine how you Must of felt then & now.

As I said your an inspiration x

[ludo]

Poor you Laura. Your symptoms are never ending. Hope your Birminhgam appointment on Thursday goes well and you get some answers and the treatment you need. Look forward to hearing how you get on.

If your concerned it's a blood clot you shouldn't leave it till then though.

Best wishes

[LauraMk30 in reply to ludo]

Hi Ludo, I know.... I must sound like a broken record..

Friday is D-Day, I have had a fear of trains since a very bad experience so Me & my dad are travelling together. 🤞🏻

To be honest I don't think it's a blood clot as they couldn't find it last time. In my leg or lung. I'm not sure what it is but it's very swollen, toes don't touch the floor. I've put them in a ice bath & elevated them now.

But thanks I'm looking forward to hopefully giving you some good news x

[ludo]

The vasculitis clinic is usually a Thursday. I guess they must have special appointments for new patients like yourself Laura. Its 12 years since I was first seen there. Vasculitis is complex and systemic so I'm not surprised your having to cope with lots of differing symptoms.

Good luck with your appointment x

[LauraMk30 in reply to ludo]

I've just checked my appointment definitely Friday at 1pm. It's all new to me Ludo.. 12 years ! How are you doing ? Is there anything I should ask on Friday.? I have something prepared but I don't want to miss anything out.. thank you xx

[ludo]

I took a list of my symptoms etc of when it all started and what treatment I had. Mine started in my sinuses. No amount of antibiotics or pain relief helped. I was in quite a state when I was eventually diagnosed. It had affected my hearing and lungs. That was after only 6 months from onset of symptoms. Although on hindsight I was getting fatigued and night sweats lots of tooth ache, nose bleeds etc a few month s before then. Luckily my kidneys weren't affected though I have a poor renal function.

I've been in remission for some time and stopped my immunosuppressant in January this year. I have to stay on prednisolone 5mg due to adrenal insufficiency from long term steroids, but it's a small price to pay.

Sounds like your well prepared Laura. They are experts in their field so you should be well looked after. Thanks for checking the date I didn't want you to miss your appointment.

You can catch a train from Birmingham new street to the university which is walking distance from there to the hospital.

Ludo x