Achey legs

[chandlermandy]

Hi guys, spent last night with very achey/painful legs, mainly thigh and calf muscles. Took pain relief and brufen but it didn't really help, just knocked me out. Anybody else experienced the same and what did you use?

[mol61]

I have this pretty well all the time these days despite taking Naproxen, (like ibuprofen but stronger) twice a day I think it is the inflamation in the blood vessels caused by the Lupus

[misty14]

Hi Chandlermandy

I have found steroids are helpful for achey legs- muscles or joints as it's definitely inflammation. Have you ever tried them?. Might be worth asking your doctors?. X

[EOLHPC]

I second misty's suggestion re steroids, which have helped me with the aspects of this sort of trouble that hydroxy & physio couldn't quite reach

And I'd add that intensive daily gastrocnemius stretching has greatly reduced the cramps & aching in my legs generally, calves & feet especially:

nothing has made such a difference for me - although a recent 10mg 4 week prednisolone taper did boost the effects of this rehabilitation stretching even more. I've been doing this leg stretching for 40 weeks now, 40 minutes per day, 20 min a.m. & 20min p.m., 1 minute per leg, alternating. This regime is arduous & hurts a lot at first, but helps stretch leg & feet tendons that have tightened painfully due to inflammation of the tissues in legs & feet due to SLE. Since jan 2014, I'm on daily myco as well as hydroxy, which hopefully helps this stretching rehab a lot. It's important to get your meds right in order to max the effects of this stretching....and when I'm on prednisolone these leg troubles are always helped a lot

My regime was prescribed by a top consultant: I'd recommend you do not even consider trying this stretching regime without your consultant's approval.

[barbara1234 in reply to EOLHPC]

Would you be able to tell us what the stretching comprises? Thanks--Barbara

[EOLHPC in reply to barbara1234]

My lower leg/foot tendon untightening regime:

Barbara, I posted this on forum 9 months ago & got 4 Replies...

following on from my reply to Irishgirl13's question about lower leg pain & hypermobility, several here on forum had asked for more info on the physio regime that has made a big positive difference for me over the past 9 months back then

So here it is again...hope this is what you wanted to know:

after decades of gradual debilitation, pain & disability....despite conscientious compliance with all treatments & lifestyle managements prescribed by my typically multidisciplinary team of NHS & private drs & co. I had almost given up hope of improvement, when my Pain Consultant referred me to the 'wizard' leg & foot expert NHS prof ortho surgeon who prescribed this regime, in order to avoid surgery which is dangerous & problematic in my particular case. If anyone is interested, I have given more detail on the background and progression of my symptoms & on how I have responded to this regime...this is all in my reply to irishgirl's question....I also have given a link to the brilliantly helpful hypermobility.org website . Perhaps I should add that my version of hypermobility appears to be the Ehlers Danlos type. The various 'types' of hypermobility are outlined on the hypermobility.org website.

Ok: first off, I caution everyone reading this post to check with their drs, rheumatologists, physios etc BEFORE even thinking about trying this regime. Because this regime is extreme and I am not qualified to recommend it to anyone. All I can do is tell my story in the hope it might help some of you in your discussions with the professionals involved in designing the appropriate treatment plan of physio for your version of lupus. Please be careful folks!

So, first the wizard consultant listened to my story, examined me and did a very simple diagnostic test re foot drop in his office. Then he told me that, even though we all know that I have several other serious chronic diagnosed conditions affecting my feet & legs, he believed that I could very soon put my cane in storage and walk with much less pain and much more stability if I complied with the physio he prescribes. He warned me that this regime required perseverance and care, but that he felt I could manage it. He explained that due to my infant onset lupus going without systemic treatment until very recently, my leg & feet problems had been progressing unhampered since childhood, but that, even at 59 yrs old, all was not totally lost....especially as I am receiving effective systemic treatment for my version of lupus

and now that I'm 36 weeks into this consultant's daily regime, it's clear that he had assessed my particular case accurately. and, what's more, now that the condition of the soft tissues in my legs & feet are responding to this regime, I can observe how my daily SLE meds enhance the regime's effectiveness, e.g. Last jan '14 when I added 1000mg myco per day to the 400mg plaquenil & 20mg amitriptyline I'd been on for 3 yrs, I felt a surge of improved response in my tendons & joints to this daily leg & feet physio....and right now these parts of my bod are responding positively to the 4wk pred taper I'm currently on now for a neuro/cerebral flare.....for me, all this is largely about sticking close to my drs' treatment plans, while aiming for sensible self awareness + common sense expectations: I still have to take my meds conscientiously, pace my activities & do all the usual lifestyle management stuff (orthotics, diet, supplements, exercise, meditation etc etc).

The regime:

-40 minutes of daily gastrocnemius stretching, consisting of 2 sessions of 20 minutes per day. 1 x 20 min session a.m. & 1 x 20 min session p.m.

-during each 20 min session, stretch alternate legs, allotting 1 minute of stretching per leg, until the 20 minutes end

-do not bounce as you do these stretches

-continue this regime daily for a minimum of 8 weeks and review progress with your drs

NB do find something to cushion your hands and protect your wrists: because my hands & wrists share many of the conditions affecting my lower legs/feet, I had to look after them too....it was clear from the outset that this would exert considerable strain on them....making my hands/wrists vulnerable to the great pressures exerted on them in the course of this extreme rehabilitation regime....this regime can't work unless you're truly feeling your tendons & muscles stretching...which hurt me like heck for the first 3 weeks, right up into my upper leg as well as in my hands. But my toes & feet were responding positively from day 1, so I persevered....eventually I settled on pressing my hands against a waist-height level window sill which I cushion with a 2 ft piece of foam pipe lagging (would you believe!)

There is plenty of guidance online, but, below, is just one link which could help you to understand the position & action of gastrocnemius stretching. My consultant prescribed the version of stretching which involves 2 hands outstretched against a supporting wall or ledge, with one leg back etc, but as the weeks passed, and my confidence grew, I added a few minutes of several other versions of this sort of stretching to my daily routine:

foot-pain-explored.com/...

36 weeks into practicing this daily regime, I can now actually miss the odd 20 min session, but I try not too. It's become crystal clear to me that my tendons want to tighten up again, and will do so given half a chance...and I don't want to go there again if I can help it...

Again: BE CAREFUL FOLKS: talk to yor medical team BEFORE even trying one tiny session of this regime!

XO

PS apologies for any typos..I've searched & searched them out, but am sure some have survived....

[IrishLupie]

I get the same but I have dermatomyosotos in addition to my Lupus which ups the muscular involvement. A good dose of steroids usually sorts me out.

[Maggiesinger]

In addition to my lupus and fibromyalgia medication l also take Calcium Magnesium and Vitamin D 3 in one tablet and this seems to help especially at night .

I was taking ibrufen but had to stop as it beacuase it negatively affected my kidney function.

[Maggiesinger]

In addition to my lupus and fibromyalgia medication l also take Calcium Magnesium and Vitamin D 3 in one tablet and this seems to help especially at night .

I was taking ibrufen but had to stop as it beacuase it negatively affected my kidney function.

[jojo-lianne]

For anyone that finds magnesium useful, I've found it in a topical oil spray (Better You Magnesium Oil Spray) which is applied directly to the effected areas. It's been amazingly useful for me and I'm kicking myself today for forgetting it in my rush to get to work on time. My legs are very, very sore this week and this has been the only thing able to give me enough relief to sleep!

I use the Sport and Goodnight ones and you can find it on Amazon much cheaper than in stores if you want to give it a try.