Numbness in legs when running

[Di-do]

My 12 year old daughter has started to get numbness in her legs when running in pe, she suffers with raynauds and takes Hydroxychloroquin for 'evolving Lupus' (she's too young to have a definite diagnosis.)

Has anyone else suffered with this?

[Diana-Coelho]

I suffer with the same thing when running. Until now I didn't discover a way to avoid it but as I get fitter it doesn't get so bad. When I first started it would hurt and finishing was quite hard. Nowadays it's just annoying. 

[Belee]

Hi, yes! I get this too!...I'm 42 and have run since I was a teenager.  I was diagnosed with lupus 3years ago and about 2 years ago I started to get 'weird' sensations in my right leg during a run.  It starts off in the ankle area and feels like pins and needles which just gets worse and worse and gradually moves up my leg until my whole leg feels numb.  I sometimes get it when out just walking my dogs.  I've had a nerve conduction test and 2 lots of physio but still no one can tell me whats going on. I've recently had an brain MRI scan but  I'm still waiting for the results.

I'll be very interested in any responses you get!

I hope your daughter gets some answers too

xxx

[ruthgriffith in reply to Belee]

  your  lacking     this  mineral magnesium  and    vitamin c  

[Belee in reply to ruthgriffith]

Thanks for this suggestion. do you know how much magnesium is recommended to take daily and any particular brand?  Really want to try and see if this will help!   I take vitamin B6 and vitamin D by the brand solgar so  wondering if this is a good brand to try?

[ruthgriffith in reply to Belee]

i feel it is a good   source    i use  natures way  products too   magnesium    500  mg  a day    take   2000  mg of vit c  too     but dont take   the  vitamin  c   all at once  spread it out  to three times  a day   till  it   equals 2000mg

[Belee in reply to ruthgriffith]

thank you so much for your advice.  I cant wait to see if this helps.  Can't believe it could be something so simple!!

xxx

[ruthgriffith in reply to Belee]

alot of   people   suffer  from  lack of  minerals and  vitamins   and   diets   but   the    drs do not tell  people  about     that   

[ruthgriffith in reply to Belee]

just  like brain  fog   it is  caused    by  not enough  oxygen  in   the  brain   because of poor     blood  flow    most cases  of  poor  blood flow is  plaque  build up   and then  plaque  build up leads to  high cholesterol or worse heart disease  bless  you

[Paul_Howard Partner LUPUS UK in reply to ruthgriffith]

Blood flow abnormalities are one potential cause of brain fog in lupus. This is most often relevant in people who also have antiphospholipid syndrome ('sticky blood'). You can read all about brain fog in our post here - lupusuk.org.uk/coping-with-...

[ruthgriffith in reply to Paul_Howard]

your right    sticky blood   does cause brain  fog  also

[Paul_Howard Partner LUPUS UK in reply to ruthgriffith]

The recommended daily allowance of magnesium is 270mg for women.

 You should be able to get all the magnesium you need from your daily diet.

The recommended nutrient intake for adults is 40 milligrams of vitamin C per day. On average, adults in the UK have about 80 milligrams of vitamin C per day.

Belee, before taking any dietary supplements, please discuss it with your doctor because sometimes considerations for interactions with treatments and medical conditions need to be considered.

[Purpletop in reply to Belee]

An easy way to see if magnesium helps is to use Epsom salts in the bath, magnesium will be absorbed through the skin, rather than tummy.

But whatever supplements you start her on, it would be good to check with her doctor first, dosage in children is different to adults, plus they are still growing and an imbalance in vitamins, minerals, etc might cause problems, who knows?

[Di-do in reply to Belee]

Thank you, that's similar to how she describes it, then her legs feel like jelly then go numb.

[baba]

Lupus in children can affect them anywhere, it is often more aggressive in children than in adults. There is a specialist lupus centre at AlderHey children's hospital Liverpool.

[Barnclown]

Hello di-do.  Am glad you're here

Yes, I've been coping with numbness in my legs & feet all my life 24/7.  This numbness flares for various reasons...some reasons I sort of have figured out..others I really haven't...I think my doctors more or less know what this is about in my case....because my combined therapy lupus prescription meds do pretty much keep this damped down: daily hydroxy + low dose pred, myco & amitrip.  I was never a runner, but I played tennis & field hockey which this numbness did interfere with at times...especially during growing spurts age 10-18

I'm 62 now.  My version of lupus was infant onset - diagnosed in the early 1950s when I was a toddler on the east coast in the states.  Of course, back then, research into lupus had only got "so far".  In more recent years, a child like me would've been closely monitored with joined up management of multisystem treatment plans.  I suspect my version of early onset lupus was relapsing & remitting, and mainly relatively mild.  But I was always hyper reactive to environmental stimuli (heat, cold, insect bits, plant toxins etc...had loads of rashes) and prone to vertigo, upper & lower GI probs, sinus & chest infections, mouth ulceration, fevers etc etc

During my years growing up at home, physicians dealt with extreme flares but otherwise my mother was so anti the medical profession that she tried to mainly help me via diet, supplements, exercise & pacing activities.  She never told me or anyone other than doctors about my lupus.  I just thought I was more suseptible to health probs...which meant I was more limited in some ways than my contemporaries.  Which wasn't exactly fun.  But I still had what I choose to think was a well-rounded time growing up....before I moved the the UK @ 21....where the NHS inherited me with no medical records.  

So for several decades, in the UK my lupus went unrecognised while various NHS clinics diagnosed & treated me for multisystem secondary conditions until 5-6 years ago...at which point widespread progressive debilitation finally led to lupus diagnosis at one of the UK's most famous international teaching hospital's lupus & Vasculitis clinic where I'm responding very well to all treatments...feeling better than I have since my 20s.  Fortunately my mother is still alive and has been able to tell us about my early lupus diagnosis & treatment.  This has fascinated my consultants and our rheumatology research dept...and also this has brought me and my mother much closer than we've ever been...even though we're on different sides of the Atlantic 

I have had a wonderful life despite my health...took 2 university degrees, enjoyed a fulfilling professional career, travelled and am in a long happy marriage...all this while managing constant health challenges has been tough, but I've made it do far so good 🤗.  Raynauds has affected me from my earliest years.  Also, I have vascular type ehlers danlos hypermobility.  These 2 conditions do seem involved in my numbness...along with secondary sjogrens.  Is your daughter hypermobile?

I hope something in there is useful to you...apologies for going on at such length, but this subject is close to my heart and I seldom encounter mothers like you

Sending every best wish to you and your daughter...it means a lot to me that you're closely involved together in the diagnosis & treatment process 

🍀🍀 coco

PS you may find this link to a research report interesting - I just posted this here on forum...it's somewhat related to your question:

healthunlocked.com/lupusuk/...

[ruthgriffith in reply to Barnclown]

so     because  lupus    attacks    other  organs in the body   do you do herbs    that      heal or   makes    each  organ  stronger for  better health

i  give my sister  minerals  , vitamins  and herbs  and     alot of     veggies daily , so far she    is doing very   great  ,, her dr says that   her lupus  has  not progressed   either 

[Barnclown in reply to ruthgriffith]

Hurrah: well done!

Yes: my mother taught us all to be aware of the importance of diet & nutrition.  My consultants tell me they think that I've survived my immune dysfunction as well as I have all these decades without daily systemic prescription meds (and despite years on useless prescription NSAIDs & analgesics that made my chronic GI probs & rate of loss of bone density even worse) because I've been conscientious about eating appropriately, taking the right supplements and getting my excercises + pacing of activities more or less right.  Apparently I'd be even worse off now if I hadn't

But since my lupus diagnosis was recovered, I do check all my supplements & herbs & other dietary regimes with my pharmacist & consultants: it's very important we are cautious & careful...many of our treatment plans involve various contraindications

[Di-do in reply to Barnclown]

Thank you so much for your reply! Ellie has suffered from a very early age with rashes and joint pains but it wasn't until she was 9 that a doctor decided to send her for tests. 

She is amazing, she dances two night a week plays netball twice a week and trampolines. She has never had any time off of school even when she's been really ill she has gone to school and fell asleep in class! 

She has many health issues all around Lupus but this numbness in her legs has only recently started. It's hard for her because she loves pe but can only do so much before her legs turn to jelly and go numb.

I think I will message her consultant at Queens and ask for further advice.

Thank you again

Debbie

[Barnclown in reply to Di-do]

Good plan!   After I replied, I couldn't help continuing to think about your question...kept feeling sure you'd contact the consultant about this

Ellie sounds like a lovely girl!  It's a delight to have met you

🍀🍀🍀🍀

[ruthgriffith]

your daughter  needs  more    magnesium    and vitamin c  to stop the    numbness in her legs

[Paul_Howard Partner LUPUS UK]

Hi Di-do,

Where is your daughter currently being treated? I've never heard of a 12 year old being too young to have a definite diagnosis of lupus. In fact, I know of many people who were diagnosed before that age. It may be best to seek a referral to a centre that specialises in juvenile onset lupus. If you let me know what area you live in I could provide you with more information about who your nearest specialist may be.

[Di-do in reply to Paul_Howard]

Hi Paul

Ellie is being treated at Queens in Nottingham. We live in the Mansfield area.

[Paul_Howard Partner LUPUS UK in reply to Di-do]

Hi Di-do,

That is a centre for young people with lupus enrolled in the JSLE cohort study group. The principle investigator there is Satyapal Rangaraj. Has your daughter seen them?

[Di-do in reply to Paul_Howard]

Dr Rangaraj is Ellie's consultant. They are really good with her and says everything points to Lupus but they refer to it as 'evolving' on paper work.

[Di-do]

Hi everyone,

Thanks for your replies, I have emailed her consultant who has made an appointment with physiotherapy in a couple of weeks. I will let you know how she gets on.