I don’t know if anyone here can help me… - LUPUS UK

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I don’t know if anyone here can help me…

Willow7733 profile image

I have this problem where my Achilles’ tendon attaches to the back of my heel. I have a large bump and pain. Xrays show inflammation in that area, causing this lump.

I work on my feet all day, and in comfortable sneakers. But the pain is bad by the end of the day. It starts at that point in the morning, but by afternoon the pain is up the back of my to above my knee.

I can’t find any info on the internet as to why this happens or what exactly is it. When they did the xray, they told me what was found and I went to physio, but they kept treating the bottom of my foot and that isn’t where the pain or problem is. They dry needled my calf, but again, not even touching the problem. I had to quit the physiotherapy because it was costing me a lot for not helping me at all.

I am also trying to figure out what I can do or wear to help at work. Has anyone had this problem??? I can’t find any info on the internet for this. I don’t even think it is a lupus problem? I don’t know…

43 Replies

Can you re-read your post? You say that "the pain is up the back of my to above my knee." Did you miss out a word? "Pain is up the back of my ......what area? It might help us to understand if you explain it a little more?

Oops! Missed a word. The pain is up the back of my leg. It starts at the attachment of the tendon on my heel, and by the end of the day the pain has spread up the back of the leg to behind my knee and some days to the back of my thigh.

Sound very painful. Did they say that you have ruptured or torn your Achilles tendon?

Were you able to point your toe down to the floor after the injury?

It is so painful. Nothing is torn, just inflamed. They really didn’t say much about it. But when my GP was checking out the lump (it is on the right foot that hurts) he tells me there is a huge lump on the other foot tendon too! That one doesn’t hurt at all. I didn’t even know it was there. It isn’t as big as the node/lump on the right though.

And it isn’t my shoes. I wear sneakers or open back sandals (Birkenstock’s) all the time and my sneakers aren’t laced up tight so I can slip them on and off at work.

If it is your Achilles, and it sounds like it is, the pain will be likely to radiate up the leg throughout the day. That's probably why the physios were focussing on that area. Working on your feet all day won't help for obvious reasons, I feel for you!

Lots of people who have a ruptured Achilles go on to rupture the other one quite soon after.

I know you haven't ruptured your Achilles but if it is inflamed, painful and swollen I'm just wondering if the other one is too. Do you have a confirmed diagnosis of connective tissue disease as some people with CTD seem to struggle with damage to their Achilles. Some anti-biotics such as Ciprofloxacin are a no-no for us for this very reason, or so I have been told by my rheumie.

Sorry I can't be more helpful. All I can suggest is to rest and ice the inflammation whilst keeping up the physio excercises.

I wish I could help more.

Can you upload a photo when the platform glitch is fixed. Currently can't upload pictures apparently.

Omg you have helped me more than anyone in the last few months! I have a lupus/connective tissue diagnosis. I was thought to have APS with it, but they are waiting for that. My rheumatologist says I need three separate blood clot events until I get a diagnosis, and I have had two since December. Apparently he said a diagnosis hinges on miscarriages, and I haven’t had any children so APS is a big question mark.

I am just at a loss with it all because I would really like to have this pain in this leg go away. I am limping quite a bit. I took a picture of my Achilles Tendon and heel and tried to upload it, but as you say, it didn’t work. I will though as soon as the glitch it fixed.

So you're waiting for your third APS test? They have to be 12 weeks apart I think? Have they out you on prophylactic aspirin (small dose) just in case?

Also, you can get better images of an Achilles with an ultra sound. In my opinion it shows up soft tissue injury better than on x-ray.

Am I correct in saying that you've had 2 positive tests for APS before. I've never heard of an APS diagnosis hinging on pregnancy or miscarriage before. I have two friends with APS and I'm sure that there are many on here who can support you better than me. But to have someone say it hinges on miscarriage is a totally outdated in my opinion. What about the woman who isn't sexually active, who isnt seeking to become pregnant or is in a same sex relationship. I'd be concerned about seeing a Dr who said that. Yes, miscarriage is a question to be asked sadly, but it isn't the be all and end all of the APS diagnosis as far as I am aware?

I am on blood thinners for life. I have had several pulmonary embolisms since December and two large DVTs in my left leg.

Yes, I have had two positive test results for APS, it sure does take a while to get a proper diagnosis. As for the miscarriages thing - that is what I was told in the hospital. The fact I haven’t had any (I have no children), is making the APS diagnosis harder to pinpoint. It has been quite a long few months, and I am so tired of it all. I was relatively healthy up until last December, and then everything went crazy. Just been diagnosed with diabetes two weeks ago.

Now this Achilles’ tendon thing. lol

Hang in there. I'm relieved to hear you are on anti-coagulants given you have had previous clots, although not very nice for you.

So I guess you've got the pain in your leg, the pressure of waiting for an official diagnosis of APS and you've just been diagnosed with diabetes. Any one of those is ALOT!

Do hang in there, try to take each day as it comes. Be kind to yourself, trust me it's easier said than done. I've been sent on a self-compassion course by my consultants. It's hard work, I have homework each week. My point is being kind, really kind to yourself is important but it isn't easy. But do try.

Keep posting on here too. There will be alot of support for you. You sound as if everything has all just come at once and that is just horrible. But it can improve once you have a handle on your leg pain, a formal decision about APS and a good understanding and management of your diabetes.

One step at a time. Keep posting. Even if it's just to vent. You should see some of my posts when I'm in full force 😂.

It really is a great forum.

I need some sleep now but keep going. You've got this far.

HT 🌷🌈

baba profile image
baba in reply to Willow7733

If you have had two positive results for APS, (12 weeks apart to exclude false positives), and you have had clotting events, then you have APS. You may test negative in the future but that doesn't mean the APS is gone, glad you are on anticoagulants for life.

Men suffer from APS not diagnosed by miscarriages!

Information links:

ghicworld.org/

healthunlocked.com/hughes-s...

Following on from all the great feedback from our HT....

My version of this has been progressively debilitating & is attributed to my hEDS + infant onset lupus. It’s diagnosed as mainly due to the combo of:

1 h EDS-related Haglunds Deformity, alongside several other hEDS-related feet issues:

ehlers-danlos.org/informati...

2. Retrocalcaneal Bursitis:

saintlukeskc.org/health-lib...

3. Very early onset AID/CTD-related vascular debilitation + tendon tightening + Raynauds + peripheral neuropathy (small, medium & large fibre) progressing to severe ischemia reperfusion injury:

ncbi.nlm.nih.gov/books/NBK5...

My heels & achilles & ankles are constantly miserable. despite a lifetime of conscientious foot care inc looking into my version of all this with decent practitioners of various types and bespoke orthotics insole prescriptions from my teens onwards. it’s taken pretty much all my 67 years for my version of this to be convincingly diagnosed & given the sorta care it’s desperately needed... but now, of course, the damage can’t be undone 🤷🏼‍♀️..I’m sure, though, that we did slow the progression down 😉

Glad you’re looking into your version of this right away...wishing you all the best with getting the best poss care for this...Hoping something in my offering above can help 🍀❤️🍀❤️🍀❤️ Coco

Barnclown profile image
Barnclown in reply to Barnclown

Inadequate, but maybe can be useful to you

I struggle to get decent photos, but this sorta shows the visible manifestations
happytulip profile image
happytulip in reply to Barnclown

Hadn't thought of a bursitis, good thought Coco. Good to see you on here x

Barnclown profile image
Barnclown in reply to happytulip

😍👋👋👋👋 good to see you dear folk! You’re all ALWAYS on my mind❣️

I’ve lived with bursitis in various other spots, but had never heard of retrocalcaneal bursitis until recently when mine was diagnosed due to the ischemia reperfusion injury becoming so severe etc. My rheumy’s 150mg sildenafil is helping the feet & ankles generally, inc getting the actual achilles wounds to heal + somewhat damps down the inflammation & swelling (this photo was taken after several weeks of sildenafil), but my flippers are still more or less in 24/7 torture 🙄.

yes, feels good to pop in, thanks...missing you all, but Life v limited due to the v early onset 🦓ness getting extra cranky...so having to count spoons A GO GO🤷🏼‍♀️...that little opioid trial my GP & I started back in June for managing the lumbosacral stenosis while on lonnnnnng waiting list for surgery, very quickly got me in trouble...by mid July GP had rushed me to our smaller local NHS hosp’s A&E where was admitted to surgical ward for 6 days of perplexing the gastro surgeon & his team 🙄....avoided surgery, but sent home in care of my Addenb gastro team + GP...still trying to fix this & stabilise me ...lost a lot of weight I couldn’t afford to...you can imagine...🤞 for big video appt with my gastro tomorrow 💞💞💞💞

happytulip profile image
happytulip in reply to Barnclown

Oh I am so sorry the MST doesn't work and you've had to do a stretch inside. I really hope you were looked after well and hope your appointment goes well tomorrow. I will be thinking of you.

So glad to hear that your feet are better than they were and your sildenafil is working. Sorry to hear about the pain tho. Might it improve in cooler temperatures? My EM is really bad at the moment. The jab has revved that up to.

Lupus and feet, not great eh?

Barnclown profile image
Barnclown in reply to happytulip

🦓👍🙄❤️🤗🍀🍀🍀🍀🍀🍀

happytulip profile image
happytulip in reply to Barnclown

Good luck today x

Barnclown profile image
Barnclown in reply to happytulip

💞💞💞💞

louise-a profile image
louise-a in reply to Barnclown

E danlos is a bigger issue than first thought for me . Your gastro issues are so difficult very sorry to read how things have gone with pain relief etc . I now have a physio who knows all about Ehlers and really helpful. I am exhausted with fighting awful infections and surgery may be my only option. Take care dear Coco, but lovely to hear from you. xx

Barnclown profile image
Barnclown in reply to louise-a

😍 Always by your side 🦓🦓💞💞💞💞

louise-a profile image
louise-a in reply to Barnclown

I think of you every day. All so tough . !!!! xx

Hi Willow,

I found similar foot issue which of course can effect your whole muscular structure.

Google Plantar Fasciitis... I had this sadly in both my feet and needs sorting or it really can get painful to walk....

I am sure treating it as Plantar can't hurt, lump & all...

- physio - mine treated all of me- back legs & feet first putting heat bags on me then really working my muscles...as your whole body will become off balance & impact your legs & back...

-I switched to birkenstock like sandals this year & I am just feeling creeping pain in my rt foot 😬. Till now I was wearing trainers/walking shoes lots of support with insoles or transferring the insoles in say sketchers (for years)....going back to this pronto to prevent further problems & pain....

-my sister love her sent me all sorts of straps & even a night boot to wear to stretch the achilles area...loads of info on this...

- Also, look as your foot being angry & in flammed & sick needing help, insoles really helped to rebalace my foot & pad it...so back to my routine.

I quickly googled this:

Quick Plantar Fasciitis Treatments You Can Do for Immediate...Massage your feet. ...

Slip on an Ice Pack. ...

Stretch. ...

Try Dry Cupping. ...

Use Toe Separators. ... (Never used these)

Use Sock Splints at Night, and Orthotics (insoles .. )

During the Day. ...

Try TENs Therapy. ... (Never used this physio did)

Strengthen Your Feet With a Washcloth.

(Google foot stretches & using say a tennis ball to roll under your arch, etc.)

I am sure all related to our various overlapping issues...

By the by, this has helped me motivate me to do the stretching & massaging on my foot....

Hope this helps if I can post picture of insoles will do.....ml

Willow7733 profile image
Willow7733 in reply to maggielee

I know plantar fasciitis really well, my father had it for years. He suffered a lot. What helped him was to roll a tennis ball under his foot and use ice when he could. My pain is not under the foot at all, it is the lump on my Achilles’ tendon that is bothering me. It burns so much. Even at rest. I hat I did enjoy at the physiotherapist is when they would put heating blankets on my legs after the session. It felt SO nice! Thank you for the information, I find it most helpful! Hope you are feeling well today. I also wear Birkenstock sandals and I really love them.

maggielee profile image
maggielee in reply to Willow7733

I had the lump on the achilles too.... That's why I thought similiar excercise or supports might help...I decided to put the compression sock that I have, we will see here a link if uour interested covers a multitude of foot problems:

amazon.co.uk/AVIDDA-Fasciit...

Loved the birkenstocks but they didn't love my feet.....to hard .... ml

You sound like you are suffering from the same thing as I've had for 3/4 weeks. I have bought some compression socks which seem to be helping, I think that would be especially helpful if you are on you feet all day. I've also been using a massage gun which helps. You can buy compression socks online. Hope you get relief soon.

I have been wearing thigh high compression socks since the day I got out of the hospital (January 11th). It helps SO much with the swelling and pain. I hated them at first but now I wouldn’t go without them. It feels like a good support when I am on my feet all day. I wish they would last longer! I have been through six pairs already and they are $320 for two pairs at a time!

Wow thats extortionately expensive, I paid around £15 for mine, I wonder what makes yours so expensive.

I've just read that yours are up to the thigh, mine are only knee high.

My insurance only covers two pairs a year, and high sucks. I hen the insurance kicks in, I only have to pay $35 for the two pairs. But luckily, I get a discount because I work for a hospital, but it still comes to $330ish (with tax) for two pairs.

Glad you get a discount but it still seems so expensive, could you buy medical grade ones online cheaper?

I don’t know. It is a good thing I have a great job but it hurts when I have to pay that amount of money when it could go to something else. I justify it by telling myself it is keeping me safe from future clots.

I understand what you are saying and your health & protection definitely come 1st. Hope your leg feels better soon.

I have to add its only a thought, I would hate to think I suggested something which makes it worse.

Oh no! It really really is helping me so much. Thank you for posting. I get such great info from everyone!

This is lay advice but it’s helped me a bit, under your insoles place a foam powder puff which are available cheaply in any chemist. I use them under my big toe joints too. I have RA and inflammation in the tendon area, RA in feet, knees, hips snd other joints. I do this as well as using a bespoke insole. Nothing to lose if it helps 😀

I will try to show a picture…the lump above my heel.

My Achilles Tendon bump

A notable bump!

It burns and is getting bigger. By the end of my shift the burn is up the back of my leg to my thigh. It hurts if I am on my feet or sleeping. Doesn’t matter.

maggielee profile image
maggielee in reply to Willow7733

Googled it earlier...looks really painful & with support stocking too....was thinking it was on your sole & that is quite a different spot....Will read with interest to see if anyone else has suggestions...ml

Willow7733 profile image
Willow7733 in reply to maggielee

It is hard. I am thinking of getting open back shoes for work. But my sneakers aren’t rubbing against the lump. My sneakers at work are really comfortable. If my shoes were causing the problem, the lump would be red.

Hi, I couldn’t see your picture but sounds weirdly like what I have. However I had torn my Achilles, didn’t realise at time how I have no clue 😳 and then built up a huge amount of scar tissue around it and up my calf. Had senior physiotherapist working on it for over a year breaking down scar tissue mobility exercises at home etc. She told me basically days of wearing flip flops sandals anything with open back over. Slippers at home should be a trainer as well as day to day shoes also had orthotic insoles made. I wear compression socks on my really bad days. Was also told to get running type of trainers with more support or ones with a slight air eg Nike bubble to disperse impact when walking. Was told to avoid soft squishy like memory foam? So I empathise with you on your feet with your job. I’ve got a small one on my other Achilles my largest is on my left. Even if I knock it slightly getting my shoe on can be unbearable. Seeing Rheumatologist in a few months hopefully he gave me a steroid injection it’s taken a bit of edge off but not hugely so will see. I hope you get some comfort x

Love it! Thank you!

I only took five days off work when I was released from the hospital ( for 6 Bilateral PE’s and a huge dvt. Stayed a month in ICU). And I was falling down all the time! At home. At work. At the grocery store. It was awful. I told my specialist and all I got was “oh. That isn’t normal. Why do you think that is?” And that was that. Had no idea it is a symptom of APS. 🤷‍♀️

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