Calf & knee pain - sound familar to anyone? - LUPUS UK

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Calf & knee pain - sound familar to anyone?

Nat1969 profile image
8 Replies

For the past couple of months I've been getting a pain in my knee that comes and goes. It's been quite painful and making me limp/favour my left leg. The last time it came back, I saw a physiotherapist. After answering multiple questions about the pain and exercise (in my case, lack thereof), whilst lying down she moved my leg and knee around without much pain. Then whilst sitting down she had me put my chin to my chest, hands behind my back and lift my leg. Whilst I felt the stretch, it wasn't particularly painful which lead her to believe it wasn't a knee problem. She had me lay on my right side and then proceeded to prod, push, manipulate my left hip/lower side and all down my left thigh to my calf (very painful - I felt "beat up"). She then asked me walk around. The pain was less. She repeated the process twice more and when I walked around again - my knee pain was gone. Amazing!!!

I was pain free for about 3 weeks but it's back now and on top of the knee pain, I also have this awful pain and tightness in my left calf - so much so, that I'm having difficulty walking.

Every month I see a massage therapist for 60 mins which I find helps general pain management. I mentioned this to the physio and she advised me to ask the massage therapist to work on my left side to "release" something there (can't remember what she said was being released). At my recent massage the therapist worked my left side very hard. However, she also felt that I had "more wrong in my right side" and to mention this to the physio if I went back. That maybe what was wrong in my right side was causing the pain to the left. (fyi ... I'm not feeling pain in my right though)

As it stands at the moment, I'm struggling to walk with knee and calf pain and the physio is on holiday. To make matters worse, I can't stop peeing so getting up and down all the time is like rubbing salt in the wound so-to-speak!!

Does any of this sound familiar to anyone else? Is there anything else I should be doing or trying? I did think "clot", but then told myself to stop being a drama queen. However, I'm going to Florida early October so a bit worried about flight now too.

I'm 47 years old and have had SLE for 27 years. I've also got APS, Hyperthyroidism, Fibromyalgia and CKD. I'm on prednislone, hydroxychloroquine, asprin, thyroxine, gabapentin, desunin, calcium and painkillers.

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Nat1969
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8 Replies
PMRpro profile image
PMRpro

Sounds very "muscular" to me - and the problem may be on the right side but manifesting on the left. That is what happened to me.

Was what the physio suggested myofascial release?

Is there a reason for the peeing all the time? Have you discussed that with your doctor? Did it start after the recent massage session?

Nat1969 profile image
Nat1969 in reply toPMRpro

Sorry, I can't remember what she said was getting released with the manipulation ... I get such brain fog these days and my memory is really crappy.

Feeling the need to pee all the time is a recent thing (about 4 weeks or so). No soon do I pee, I already start to feel the need to go again. I thought it was just as I was drinking more water - but it seems a bit excessive. Makes me more tired getting up and down in the night too. I've heard a sensitive bladder can happen as you get older. Next time I go to the docs, I will mention it.

MrsMouseSJ profile image
MrsMouseSJ

Hi. I get legs pains that can be severe and come and go, seemingly randomly. It can be quite miserable, so you have my sympathy. I also have APS and, prior to diagnosis, had 3 episodes of pulmonary emboli; I'm lucky to be here. So now, anything severe of even of concern in my calf or leg I am very cautious about. It might 'just' be one of my odd pains, equally it might be a clot. The only way to be sure is to get yourself looked at as soon as you can. From my own experience, doctors and A&E depts are far happier assessing the possibility of a clot than having to deal with the consequences of a clot having moved through the body.

Hope all goes well for you.

Nat1969 profile image
Nat1969 in reply toMrsMouseSJ

Thanks MrsMouseSJ - I've just got off the phone with the NP at my health centre. She's told me to go to the urgent care unit at the hospital to get my blood tested for a clot and the next available GP appointment is Thursday, so have booked that for a general chat about my knee/calf pain - but she said ruling out the clot is important - so off to the hospital for a long wait I go!

MrsMouseSJ profile image
MrsMouseSJ in reply toNat1969

Good! Well, not good re the wait - obviously! - but good that you are off to the hospital. Let us know how you go.

Nat1969 profile image
Nat1969 in reply toMrsMouseSJ

Spent hours at the hospital waiting to get my leg checked for a clot. They gave me a Clexane injection in my tummy and as it was too late for Radiology, I went back yesterday to have a vascular ultrasound on leg/calf.

I'm clot-free (thank goodness - 44 days and counting to my hols in Florida). However the ultrasound showed a "mass" in my calf at the top behind/below my knee. The nurse couldn't tell me what it was. She put the notes on the system which have gone to my GP and I have a docs appointment tomorrow - no doubt they'll refer me somewhere for something.

MrsMouseSJ profile image
MrsMouseSJ in reply toNat1969

Good news re no clot. And hopefully you'll get a swift referral to whomever you now have to see!

Incidentally, have you got heparin injections at home for when your INR is too low and have you also considered taking them for Florida and the flight? I don't know if you belong to the Antiphospholipid/Hughes Forum here but I'm sure there are previous discussions re using heparin for hols/long-haul flights.

Best wishes.

Nat1969 profile image
Nat1969

I'm trying to get an appointment today - thanks hippocampal. I've tested positive for D-Dimer a few times in the past and had scans a few years back and although they put me on Clexane "to be safe", I didn't have a clot. My stomach was brused and so sore after the injections and I didn't even have a clot!

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