Lumbar puncture and hip pain?: Has anyone who had a... - LUPUS UK

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Lumbar puncture and hip pain?

Purpletop profile image
23 Replies

Has anyone who had a lumbar puncture experienced hip/top of legs pain afterwards?

I had it done 10 days ago and initially suffered with some lower back pain, then the mother of all headaches which didn't resolve until I spent a week laying flat and drinking regular coffee (as advised by the neurologist).

This morning I woke up with pain in my right hip which was manageable at the time but progressed to both hips now and reached a level of 8 out of 10.

I wonder if anyone else has had similar experience with the hips, please?

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Purpletop profile image
Purpletop
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23 Replies
thekid71 profile image
thekid71

did you have a spinal tap Done? if you had a steroid injection that's a different story

Purpletop profile image
Purpletop in reply to thekid71

Yep, spinal tap. I thought it will be easy peasy but no such luck.

Hi, I've had two LPs, and suffered from the headache you describe. I also suffered from acute pain about 48 hours afterwards which I'd score at around 8 or 9, and this was in my lower back, pelvis, groin and hips, and lasted for about 5 days. It was so severe I remember begging the nurses to do something as I couldn't stand it. The hip pain was particularly intense, but then again I had bilateral labral tears which have since been operated on, so it's hard to say if it was purely down to the LP. I found that if I got on all fours, then stretched back onto my haunches, and placed a heated wheat bag across my top hip area, I could get a little relief.

Bearing in mind I had pre-existing hip pathology, it might be safest to get it checked out as there is always the danger of a leak of SF, and it's unusual as it's so long since the LP.

Sending you gentle hugs, let us know how you get on.

Xxx

Purpletop profile image
Purpletop in reply to

That's very interesting, thank you - the pain in my hips has abated to a great extent by the morning but meanwhile another headache hit this morning. Isn't there an end in sight with this thing!?

vonda profile image
vonda in reply to

Yes babe...I prefer you to go to doctor I don't know about you but I'm getting an understanding about the lupus, not fully but I know my lupus pain. My hip was killing me so bad so I went to doc. then they told me steroids was eating away at my bones like a wore down shoe it's better to be safe than sorry plus they told me they caught me just in time..

Barnclown profile image
Barnclown

I agree with lipbalmaddict: time to get this checked out! Vvvvv much feeling for you...I could suggest various ways I cope with acute pain in same parts of my bod (eg thermacare lumbar (hip) heatwraps, available amazon, boots etc) but I suspect you know all that stuff already AND in this instance, it's important to check, following on from such a serious/significant procedure. Lumbar punctures & recovery afterwards are no picnic....take care, feel less pain vvvvvv soon. XO

Purpletop profile image
Purpletop in reply to Barnclown

I'm wishing for less pain soon too, thank you. Meanwhile I'm walking around with a hot water bottle clutched to my back - inside, of course, not out in the world.

Barnclown profile image
Barnclown in reply to Purpletop

Good thinking!

in reply to Purpletop

Oh you poor thing, it is pain like no other. When I say I begged the nurses to make it stop, I think I may have been slightly crazy and exorcist-like possessed with pain at the time. It overtook the meningitis symptoms, and the kidney failure - I just lay there crying and cursing the Dr who did the LP. And when they told me they couldn't allow me to have a heat pack or hot water bottle in hospital because of health and safely, I became quite murderous haha! I really don't envy you, I too hope it passes soon but if it doesn't it is worth mentioning to your GP. Was the LP to help with SLE diagnosis? I'm really interested in this aspect as have had 2 positive LPs which were never explained by any specific bacteria or virus xxx

Purpletop profile image
Purpletop in reply to

I had it because I have numbness in my hands during the night, tingling of fingers and feet sometimes and something like a film over my eye that comes and goes. The neurologist wanted to check whether it is MS or cerebral lupus that causes these, so he referred me to have brain and spine MRI, lumbar puncture and evoked potentials tests (the latter I still have to do).

When you say that your LP results were positive, what were they positive for? Antibodies? Specific protein? How come you've gone through this ordeal and no one bothered to explained the results to you, that's shocking!

in reply to Purpletop

Well both times they said it was meningitis, I don't know what shows up for that, but when they took the fluid then for cultures but were unable to culture a bacteria or virus and ended up scratching their heads and asking me if I'd been anywhere tropical on holiday that could account for crappy immune system. Both times I was hospitalised for weeks, with neurological changes, slurred speech, altered vision, stiff neck, headaches, vomiting, high temperature, stiff joints and rashes but this second time I went into acute renal failure and also unexplained respiratory distress with funny shadows on the X-ray that the Drs couldn't agree about. The whole thing was a shambles and I came away with viral meningitis being the explanation...but 18 months on I have never fully recovered. I have many lupus-like symptoms, particularly skin and joint problems, eye/retinal changes, with fatigue and my brain is ruined. I'm stupid, can't retain things or follow instructions. Neurologist simply read discharge note from hospital saying I had a virus and put it down to post viral chronic fatigue. I'm wondering if those LPs were showing something up that they should have explored such as SLE or Cerebral Lupus, as my health has been crazy ever since xx

Purpletop profile image
Purpletop in reply to

My goodness, it sounds terrifying what you've been through! Are you on any lupus medication? You should be, whether it is straight diagnosis, or lupus-like.

in reply to Purpletop

No, I'm not on anything. Just a bucket load of painkillers. I've had to pay privately to get to see this rheumy tomorrow who is a specialist as when my antibody bloods came back normal they told me to go away, as it was probably a mixture of stress and Fibro. Having had to give up my dream career because of it, im not for going away quietly. I really hope you get some answers and the right treatment to sort you out soon, without any more horrible piercings xxx

Purpletop profile image
Purpletop in reply to

You've made me paranoid about meningitis now - the stiff neck and monster headache I had this morning sound similar symptoms. The hosp today did ct scan and blood tests and they were normal, plus I had no fever but who knows! This is what this dreadful disease does to us, makes us fear everything!

mstr profile image
mstr in reply to Purpletop

Hoping you recover soon....that sounds like agony:( !

thekid71 profile image
thekid71

Sorry to hear about your problems. I've had 2 spinal taps..I'LL NEVER HAVE ANOTHER ONE! When that procedure is done the person who does it injects a needle on each side of your spine to extract spinal fluid. The problems that comes with this procedure are the following..headaches.. hip pain.. back and neck pain. Not just any headache but what I call an icepick headache! The pain in your hips is from sciatica. The sciatic nerve is flared up from the tap. I would go to the ER for some pain management.. God bless

Purpletop profile image
Purpletop in reply to thekid71

Actually I ended up in emergency this morning but not with the hip pain but with yet another monster headache that felt more like high intercranial pressure rather than low.

The guys at A&E said that as the ct scan was normal but the headache wasn't improving, they suggested I do another lumbar puncture, to check for brain bleeds. I said no - then I will have side effects from the second puncture and will end up having the third to check after the second and so on! In the end the neurologist was the voice of reason and he kept me monitored for few hours whilst under strong painkillers and then let me go back home with prescribed meds for the next few weeks.

I SO agree with you - never again if I can help it!

Thank you for your response.

3121 profile image
3121 in reply to thekid71

You would have one if you had so much excess spinal fluid it is pushing on your brain and making you act like a stroke patient, pushing on your eyes and already damaged the optic nerves. I've also lost all my periferal vision and the more it increases, the more vision I loose till blind. I just had my 3rd one. The first 2 was a breeze but this one has given me the spinal headache with a spinal leak. We do what we have to do. Don't say you won't never 

thekid71 profile image
thekid71

Does your headache worse when you sit down opposed to lying down? They don't tell you this but every time that a needle is stuck into your back it usually causes problems. Did you feel a shock down your spine during the procedure??

Purpletop profile image
Purpletop in reply to thekid71

The headache I had last week was improving with laying flat, so I did that for 4 days and it went away. This headache this morning started while I was laying flat and was not shifting however I was sitting, laying, or standing. I didn't feel anything during the procedure, it took less than 10 min and he sent me home straight after.

The bottom line is that this is not a nice procedure to have not because of the procedure itself but because if the after effects. And no one goes through these in any great depth with you in advance, if they would, much less people would have it done, I'm sure.

Hi purpletop, so sorry to hear you are still suffering. Someone asked recently if anyone had, had a LP. I said yes although it was about 12 years ago. I said how procedure was done on my bed, as after I had to lay flat for 8hrs or so on it. Thinking things had changed since then, people posted their recent LP's, and things hadn't changed much over the years. They all said about not moving after, but they were also advised to drink caffeine, eg.. Cola or coffee. This helps with headache. Sorry if you already know this, but I'm sure you would want to try anything at the moment.

Purpletop profile image
Purpletop in reply to

I also thought I will be allowed to stay there for an hour at least but they sent me home immediately after. Still, I've been reading in one of the medical online resources that there isn't a difference between the two, apparently the spinal fluid leakage occurs because of the type of needle used. Whatever causes it, caffeine is useful and I had to have regular coffees throughout the past week, so much so that my tummy was screaming at me to give it a break.

Thank you for your kind thoughts, much appreciated.

Ms_Stl profile image
Ms_Stl

I'm experiencing that now! ... Which is the reason I came on here! I did however, have a pre-existing condition, but NEVER any pain in the right hip/pelvis area, ONLY the left, until after this LP! It is my 2nd LP this year, the first; they discovered blood in the 4th tube (which shouldn't happen unless you have a bleed present), hence the 2nd LP. I was almost completely pain free the 1st time.. Now this!?

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