Sharp stabbing nerve pain
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,
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.
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Originally Posted by magistramarla
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.
If you find out, let me know. I've had it too. It feels like I sat down on a spike.
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.
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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.
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*
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.
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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.