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charmed60
07-28-2012, 10:13 AM
Hello all!

I'm really new here so apologise if I've posted in the wrong place. I'm after a bit of advice really; lupus is something that's been suggested to me to get tested for because of symptoms I've had for years and my Grandmother also has lupus.

I know that anyone can look at symptoms of a disease/illness and convince themselves they have it but I just wondered whether anyone with it has ever experienced sharp stabbing pains in the lower abdomen (near the groin) that radiates down the back of the leg to the knee and sometimes to the ankle. I've had it for nearly 3 years now and two different gynaecologists have been baffled as they've never heard of anyone experiencing this pain before. I do have a slipped disk in my back but it is not impinging on any nerves so sciatica has been ruled out. I get this pain pretty much every day but some days are worse than others.

I also have awful knee pain which I've never been to the doctors for as I just assumed it was one of those things but having looked at the symptoms of lupus; it seems to fit. It only happens every now and then but the pain is so intense like an aching, throbbing pain and my knee sometimes swells up a little. The kneecap also grinds when it's moved but I know this can be normal for anyone!

Something I've also noticed is the past two times I've come back from holiday in a hot country I've been covered in a rash. The most recent time I thought it may have been mosquito bites (although it looked more like an allergy as if I'd reacted to them) and the doctors didn't think they were bites either but at the same time I began getting this intense sharp pain in my shoulder which has flared up every now and then ever since. I didn't injure it at all and the A&E doctor thought it was linked to my rash in some way. But then it's continued to bother me ever since even though the rash has disappeared.

I also constantly get aching muscles as if I'm about to come down with a cold, particularly in my neck and shoulders and keep suffering from night sweats also every now and then; which routine blood tests have shown nothing out of the ordinary. I wake up in the middle of the night and I'm literally soaked and dripping even though I might be cold.

I understand that it's impossible to ask anyone to diagnose me and there are many reasons I could be getting this but I wondered if these symptoms are possibly linked to lupus; particularly with the abdominal pain as it's something I'm eager to find out what's causing it.

I'm also allergic to Septrin which I've read is another possible symptom and am very prone to mouth ulcers and going through periods of extreme exhaustion which is out of the blue and not linked to lack of sleep or extra activity. (I feel so rude as I'm constantly yawning even though I sleep well.)

Any advice would be greatly appreciated,

Thank you

magistramarla
07-28-2012, 06:21 PM
Hi Charmed,
Welcome to WHL. We can't diagnose, but if you read through some of our old posts here, you'll find that many of us have dealt with symptoms like yours and the frustrations of being sero-negative (bloodwork normal).
When I had awful pain from the groin to my lower leg and grinding in my knee, it turned out to be Avascular Necrosis and a torn meniscus. You might want to ask to see an orthopedic surgeon to check on the knee/leg.
You should also keep a very good journal of all of your symptoms and try to find a good rheumatologist who will treat the person, not just rely on bloodwork.
We're always here to answer questions and give support - we're a cyber family and now you are a family member.
Hugs,
Marla

charmed60
07-29-2012, 08:34 AM
Hi Charmed,
Welcome to WHL. We can't diagnose, but if you read through some of our old posts here, you'll find that many of us have dealt with symptoms like yours and the frustrations of being sero-negative (bloodwork normal).
When I had awful pain from the groin to my lower leg and grinding in my knee, it turned out to be Avascular Necrosis and a torn meniscus. You might want to ask to see an orthopedic surgeon to check on the knee/leg.
You should also keep a very good journal of all of your symptoms and try to find a good rheumatologist who will treat the person, not just rely on bloodwork.
We're always here to answer questions and give support - we're a cyber family and now you are a family member.
Hugs,
Marla

Hi Marla

Thank you for replying, you're so kind. I did start keeping a diary of my stomach pain for the gynae but it ended up being every day, with some worse than others so no pattern really came out of it. I found that the contraceptive pill seemed to enhance it and I get the pains more regularly and more intense when on them but when I tried coming off the pill; even though they were better it didn't get rid of them totally. I think I will start keeping a journal again of when all the other stuff is going on like the shoulder pain and knee pain to. I did read somewhere that the contraceptive pill can aggravate symptoms of lupus, I'm not sure how true this is.

I've had a look through old posts like you suggested and the electric shock pain that people are talking about is pretty much bang on to what I experience, with the burning sensation once the pain has gone being exactly the same. I've been trying for years to find other people who have the same pain with no results and doctors have always been bemused by it so it gives me some hope that maybe there is an answer. I've not ever been tested for any auto-immune illnesses despite my Grandmother suffering from quite a few (lupus, thyroid etc) so I think I'm going to make an appointment with my GP and ask for this, with maybe a referral to a rheumatologist. I'm torn as to whether to get an appointment with whoever is available or wait until the only GP I trust is back from her annual leave. Seeing the struggle that so many of you have had to make doctors listen to you, maybe I'm better to wait.

Thank you again for your help, I'm just so pleased that maybe there is an answer to what's going on. I feel like a hypochondriac keep going to the doctors for all these different symptoms and never considered that maybe they all tie into one. I've had one GP and a gynae tell me just to deal with the pain and accept that people have unexplained pain but I don't want to give up, I want to know what's causing it as it's not normal to have it for no reason.

Jltoland
08-19-2012, 09:23 PM
If you find out, let me know. I've had it too. It feels like I sat down on a spike.

blackeight
08-20-2012, 06:14 AM
I have these pains and was just recently diagnosed with Lupus. i also have stabbing hip and back pains and (sorry for being blunt) but my butt cheeks hurt. I have had mri's, ctscans, mylograms, ex-rays, epiderals, s.i injections with no relief before they diagnosed me with Lupus. no one could find out why I am always in pain until the bloodwork came back twice positive and the third time was very high. I am not saying you have lupus cause I am not a doctor and I can not diagnose you. But you have a lot of the same symptoms that I do. The yawning thing comes and goes so does the feeling blue and tired. I can have it for a month or a couple of weeks and then its gone and I can be good for the same amount of time and then its back. I am sorry that you are having these issues, but you have come to the right place for support and understanding. I have found a lot of great people on here that are more than happy to share their story and to support you in this struggle.

blackeight
08-20-2012, 06:18 AM
With my experience with Lupus and it being a very difficult disease. I would wait until the person you trusted was back. If you get any kind of diagnosis from someone you don't trust it may just put doubt in your head and extra stress you don't need. I was like you I had all these unexplained stuff that no one could tell me why. I didn't want Lupus but I did want to know why I was having it. Good Luck! Let us know what you find out we are here for you.

charmed60
08-26-2012, 07:23 AM
With my experience with Lupus and it being a very difficult disease. I would wait until the person you trusted was back. If you get any kind of diagnosis from someone you don't trust it may just put doubt in your head and extra stress you don't need. I was like you I had all these unexplained stuff that no one could tell me why. I didn't want Lupus but I did want to know why I was having it. Good Luck! Let us know what you find out we are here for you.

Thank you both for your replies! I've managed to get an appointment with a doctor I trust for a couple of weeks so I will let you know how I get on.

Thank you blackeight for your reply. In some weird way it's reassuring to finally find someone who has exactly the same type of pain as me. Being a woman they've only referred me to gynaecologists because it's in the abdomen and haven't been thinking outside the box so both gynaes have come back with no answers and told me to give up and just get on with it basically which is so frustrating :( I want to know why my body is having this type of pain. I've also been to the doctors for night sweats and other things but no cause has been found and when I put them together it all seems to make sense. However I think we can do that when we're desperate to find an answer so I'll hopefully be tested for it by this doctor and get an answer either way.

I get the hip pain to! Sometimes the electric shock feels like it's going right through my hip joint and no amount of rocking or moving about eases it. I also feel it in the back of my knee and on the side of my ankle bone. I'm sorry you have lupus but glad you've found an answer to your problems. Because these symptoms come and go I sometimes make myself think that maybe it's all in mind mind but I'm going to keep trying to find an answer. Thank you so much for your support. I will let you know how I get on.

charmed60
09-12-2012, 11:26 AM
So I've had the blood tests; thankfully had a good GP who definetely thought it was worth testing for lupus yet said if it comes back negative he doesn't know what to suggest to cause my pains :(

Am having a bit of a tough time at the moment with my joint pain and am going through what seems to be my monthly feeling like I'm coming down with the flu - swollen glands, sore throat and aching neck and muscles all over.

I've also got a rash which has been up for a week now. I had the exact same rash when I came back from a hot country (which the GP thought was a tropical disease and prescribed antibiotics) and I also had the same when I came back from Africa (which did make me wonder if it's a sun sensitivity.) However I'm not sure why it's come up again as it's on part of my body that aren't exposed (my tummy, back and one leg). I've attached a couple of pictures; just wondered in any of your experiences whether this looks like it may be a lupus rash? Some parts of it almost look like a ringworm rash. Unfortunately I caught the pictures at a time when it's not as flared. Guess I'll have to go back to the doctors again *sigh*

486048614862

Derrie
09-12-2012, 11:36 AM
Whoa, charmed60, that looks EXACTLY like the rash I have that my doctors are totally baffled by, including the fact that it heals from the center (looking like ringworm), and it's mostly localized to my torso and upper legs and sometimes upper arms. Have you had it biopsied by a dermatologist? How long does it last?

Also, I am going to PM you my email address. If you would like, please email me, and I can share pictures of my rash with you and go into more detail about the symptoms I've had, the tests I've gone through, what my doctors are thinking, and what treatments I'd tried. My doctors have definitely categoried my similar rash as part of an autoimmune connective tissue disease. Since I'm baffling my doctors, I'm very interested in connecting with people who have symptoms similar to mine.

charmed60
09-12-2012, 11:48 AM
Hi Derrie. Thanks for the reply! Glad to know I'm not the only one with strange, suspect rashes! Haven't had it biopsied yet; was going to wait for the results of the blood tests incase they showed anything and if not; go back and see if they'll refer me to a dermatologist seeing as this is the third time I've had it now. The last two times it's lasted about a week to ten days; this one goes through moments when I think it's about to go and then it flares up again. It's at its mildest in those pictures.

I'm happy to send you my email address, it will be good to see your rashes to and share everything to see if we can maybe sort ourselves out at the same time? If I get anything back in the bloods I'll let you know as it may help your GP with what tests to do - I'm pretty sure my GP said he was testing for connective tissue disease.

Derrie
09-12-2012, 11:55 AM
Cool-- I look forward to sharing information. If I remember correctly, you have odd abdominal pain like mine, too. And muscle/limb aching (I have that, too).

Like you, individual lesions last over a week, but I'll usually have at least one or two on my body at all times. They start off looking like angry mosquito bites, but as they heal, they get bigger, less raised, and paler.

As far as blood tests go, my most remarkable abnormal results have been low C3 and low C4.

I'll send you a nice, informative email about my whole experience later this evening after I get off work, so as not to bore everyone here.

jmail
09-13-2012, 03:03 PM
Hey guys, Derrie & charmed60, have you guys been to a dermatologist for the rashes? Most of them have seen things you would not believe, and are the ones to see for all things weird with the skin. 'Course, you may end up like me with a "hypersensitive reaction of idiopathic origin", which means "I don't know" in plain talk...

Derrie
09-13-2012, 04:00 PM
Hey guys, Derrie & charmed60, have you guys been to a dermatologist for the rashes? Most of them have seen things you would not believe, and are the ones to see for all things weird with the skin. 'Course, you may end up like me with a "hypersensitive reaction of idiopathic origin", which means "I don't know" in plain talk...

Yup, one of my doctors made me go to a dermatologist for the rash. He actually called and made the appointment for me even though I'd said I'd go "sometime soon" (he wanted an immediate biopsy) and then I get a call from his nurse saying, "You have an appointment in an hour with Dr. Derma."

Pushy, they were.

But my biopsies have proven pretty interesting! On biopsy, my rash has an interface dermatitis with mucin that is "identical to lupus or dermatomyositis" but immunofluorescence is negative (very unusual in lupus, more common in DM). But visually, my rash (which looks sort of like urticaria (hives), and like ringworm as it heals) doesn't look like a lupus rash or a DM rash.

"You're so weird," the dermatologist told me with a bit of a smile when I came in to get my stitches out and get the pathology results.

So far, four doctors have declared my medical issue "weird." It's pretty much a point of pride at this point.

jmail
09-13-2012, 04:54 PM
eee-yup... "weird", "unusual", "our mystery patient", "that's different"... etc. lol - but medicine is a "practice", and "art", rolled into one. Sort of like a rock & roll band gone wrong...

charmed60
09-15-2012, 08:58 AM
Hi Jmail! Not yet but am going on Tuesday hopefully for a referral, it's been over a week and a half now and it's showing no signs of going. Got my lupus test results back and everything was negative which of course is a good thing but also frustrating as I just feel like I'm back at square one with no science to back up why I'm feeling this way.

Derrie
09-15-2012, 09:02 AM
Hi Jmail! Not yet but am going on Tuesday hopefully for a referral, it's been over a week and a half now and it's showing no signs of going. Got my lupus test results back and everything was negative which of course is a good thing but also frustrating as I just feel like I'm back at square one with no science to back up why I'm feeling this way.

Hey, charmed, don't lose hope! All my antibody tests were negative, but the biopsy proved I had a connective tissue disease, and with a combination of biopsy + low complement + symptoms, my doctors take me quite seriously and have been treating me as best they can.

(PS - I owe you an email, charmed, and I'll be sending one your way today. Crazy busy at work this week, but I met a big deadline yesterday, so I finally have a full weekend off to catch up on my real life.)

charmed60
09-15-2012, 09:34 AM
That's reassuring thank you Derrie. Just hoping my rash stays around long enough for me to get to a Dermatologist. Can imagine the referral will take months though in this country so I doubt it. Just don't want my doctors thinking it's all in my head. Enjoy your weekend Derrie!

jmail
09-16-2012, 04:13 PM
Take pictures and take them with you, along with your notes to the doc appointment. I even took pics of my rashes with a good digital camera, and took the pix on a USB flash card in case they wanted to see full-sized ones, which the dermatologist did. He made copies of some of them and put them in my file. The family doc and hematologist relied upon the photos on my wife's iPhone, which takes pretty good pix, and displays them well enough also...

Derrie
09-16-2012, 07:52 PM
Take pictures and take them with you, along with your notes to the doc appointment. I even took pics of my rashes with a good digital camera, and took the pix on a USB flash card in case they wanted to see full-sized ones, which the dermatologist did. He made copies of some of them and put them in my file. The family doc and hematologist relied upon the photos on my wife's iPhone, which takes pretty good pix, and displays them well enough also...

I have a whole folder on my iPhone just of pictures of my rash in different stages. My doctors loved that I had it, and the iPhone pictures are high enough resolution that they could even zoom in and look closely. One doctor insisted I emailed them all to him.

The USB flash card is a good idea. I'm going to do that before I go to the teaching hospital. So keep taking pictures of it at different stages, and make sure you try to get good lighting.

magistramarla
09-16-2012, 08:42 PM
I'm a bit late to this conversation, but count me in for the same sort of rash.
Mine start out a small red dots, then get a silvery, flaky film over the top, and then start to heal from the inside out.
After I complained loud and long back in '99, my PCP biopsied one and freaked out because "it had T-cells".
She guessed that it was lymphomatoid papillosus.

In 2007, my rheumy found patches of scalp psoriasis on my head, so she suspected that the other sores might be a form of psoriasis.
She put me on Plaquenil and Methotrexate, and the sores all went away.

My current rheumy scoffs at the idea of psoriasis. I'm only on plaquenil, and the scalp psoriasis and the little sores have come back.
Hugs,
Marla

charmed60
09-18-2012, 01:18 PM
No referral to the dermatologist made! The GP was pretty certain I had something called pityriasis rosea which can at it's worst last up to six months and they think - but don't know - that it's caused by a virus. I did have a temperature at the appointment and she's putting this down to my night sweats and aching joints and muscles.

As for the stabbing abdomen pain; I guess they've given up trying to find what that is and it's something I'll just have to put up with. Thank you all for your support though!

tgal
09-18-2012, 02:59 PM
Ignore this post. It was meant for another thread. Deleted

debbie-b
10-20-2012, 06:08 AM
I have these pains and was just recently diagnosed with Lupus. i also have stabbing hip and back pains and (sorry for being blunt) but my butt cheeks hurt. I have had mri's, ctscans, mylograms, ex-rays, epiderals, s.i injections with no relief before they diagnosed me with Lupus. no one could find out why I am always in pain until the bloodwork came back twice positive and the third time was very high. I am not saying you have lupus cause I am not a doctor and I can not diagnose you. But you have a lot of the same symptoms that I do. The yawning thing comes and goes so does the feeling blue and tired. I can have it for a month or a couple of weeks and then its gone and I can be good for the same amount of time and then its back. I am sorry that you are having these issues, but you have come to the right place for support and understanding. I have found a lot of great people on here that are more than happy to share their story and to support you in this struggle.

I have a question about your butt cheek pain. For about three weeks, I have severe pain in my butt cheeks, in the lower part, the part you sit on. It feels like muscle pain, but not like sore muscles, like after exercise. When getting up from a sitting position, I can barely walk, because my bottom hurts so much. Do you think it could be from the hip? I also have alot of hip pain.

Debbie