Bad pain in groin, hip joint? upper thigh bone? lymph nodes? Anyone else?

Hi--

For years I've been getting spells where it feels like my left leg, where my vitiligo is worse and where it started (in the groin area), is being torn off.  The pain is excruciating and for years I though it was nerve root pain from my lower back, but docs say no.  The lymph nodes there have calcified long ago and I worry about you know bad stuff--lymphoma and bone cancer or problems of some kind.  I've been checked for arthritis there and there is none, actually my hips are very limber for my age due to my past horseback riding.  Does anyone else get this horrible, horrible pain?  It hurts down the thigh, sometimes down to the big toe, usually to the knee and has occured on the other side maybe once or twice, but not as severely.  Could this be diverticulitis pain?  It hurts so so bad.  Any help would be great. I have been through it with all my docs and they just shake their heads.  I know they figure its my lower back, but I'm beginning to think it might be lymph node related or bone and it scares me.  The lymph nodes used to weep alot when they were working and get red and swollen and even get boils on them and drain.  Its hurt ever since my hystero and reminds me of endometriosis pain.  thanks in advance for any help you  can give.

Thanks, Redrose,
For years they told me it sounded like nerve problems, maybe sacroileitis, or severe nerve root pain but could find no compression on myelogram, but did find a "loss of signal" and did not investigate. So they say no compression. The pain is like the severest pain you can imagine but comes and goes, so its hard to predict. When it happens I'm in tears and can't go anywhere, otherwise everything seems fine. It seems odd that it's in the leg with the most vitiligo, I wonder if it means anything. I'll have to bring it up to my docs and maybe request a cat scan with contrast. I fell down the stairs on my due date with my youngest son and had a very painful and long labor and delivery. I always assumed it had something to do with that but the severity is so bad I'm getting really scared about it. It can't be good to have this going on for so many years. I wonder if something they did with my hysterectomy could have messed it up? That's about when I started having it. I think it really seems like the nerve thing though and I've requested surgery for it for years, but they just say there's nothing but degeneration and nothing to operate, no stenosis or anything. Thanks for wrting me on this. I know you hurt pretty bad and I've had it prolonged before and it gets so so bad after time. Sometimes the knee gets crushing pain too after time. It seems like over the years its gotten worse, going further down my leg. You are right to get it taken care of and not to ignore it. My rheumie xrayed my hip and said nothing wrong, maybe mild arthritis. Oh, one thing to know is that I did get tremendous relief with a shot of cortisone directly in the sacroileum, if you trust them to do it. It lasted the longest time, over a year in fact, and reduced swelling in my lower back. You might want to think about this. I never slept so good after that shot.

(((hugs))) and hope you feel better soon. Sometimes I just slather it in bengay and put on a heating pad. The burning is better than the pain. It hurts so bad, you just want them to cut off your leg, eh? But of course you don't want to not have one, but the pain is that bad. Now I know how animals can chew off their legs when caught in a leg trap.LOL. Let me now how the block works. My pain management people don't want to do anything but push pills at me that I can't take or just give me pain stuff. I've asked for shots, but they don't want to do it. Oh well, eventually, it will get bad enough that even they can't ignore it.

Hi again Lulu, Now that I read the title of this topic, I see that you are feeling your pain in your groin. That actually might be your hip joint. the sciatic nerve pain that I talked about in the other post is felt on the outside of the hip/leg. Are you taking any meds? There are meds that can cause damage to the joints .. . just a thought. I'm assuming because you are posting in a lupus forum, that you have lupus and are taking lupus meds. I hope you can give us more information. Blessings!

Thanks everyone. Sorry haven't been on been flat on my back for about two weeks or more now. It gets so bad I can't use the bathroom,things are really bad on the lower back. Flared up after I quit the pred again. I can't even use a wheelchair, hurts to sit or stand or even lay with too much incline. I am making it to physical therapy, which is a joke, but they won't do anything unless I go. For years the groin pain seemed like an inguinal abscess, which it still could be, and they are often overlooked but easily treated with antibiotics, last time back flared they gae me antibiotic and told me I had PID and UTI all at once. The antibiotics helped for a few weeks then it came back. Isoniazid made it go away, but sometimes TB comes back active when people are on isoniazid because part of it killing the infection is that it gets rid of the waxy and calcium coating built up around the mycobacterium, then it is free to spread and no longer "encapsulated", but it is also vulnerable to the antibiotics. I hurt so bad, thnk will hae to have more surgery, I can't go on like this. They are going to have to get me a nurse. I hate this about this disease, you are relatively fine for months, live life, even dare to make a few commitments, then something like this happens and people deem you "unreliable" and family gets fed up. I hate it. I just hurt so bad and pain meds no working. No hope of pain management until after holidays.
They keep saying theydon't want me bedridden, but I can't barely even stand to lay in bed sometimes. I'm scared I have cancer in my back, it hurts so bad. Not like my neck, not even like when I didnt get pain meds after surgery, this is horrible. They claim there isnothing on my MRI or xray, butr don't have a recent one. I just know that this has progressed and gotten worse, so bad. And pred seems to help, but my rheumie thinks 'm nuts for freaking out and asking for it. I don't want to take it because all the docs keep telling me I don't need it, but it helps so muchand if I make it go away, they won't ever figure out what it is. Supposedly I have stenosis and herniated disks, but I have that all through my spine, this is worse, MY spine is so stiff and inflexible, no curve to my lower back and I can't bend it.

I'm sorry to complain, but this is why I haven't been on and I"m going nuts. My parents are going to freak out when they see me and take me to the ER for more better meds, probably. Oh well, maybe another ER will find out something. The polyglanduar dysfunction I have puts me at risk for multiple myeloma and my gallium scan showed increased uptake in my lower spine but nothing was ever done. A gallium scan does help when someone competent reads it and a competent doctor treats you.

Take care and hpppy holidays and thanks so much fo the kind replies. I miss you all.

Thanks, Ginny. Yeah, they tested me for the blood test for Ankylosing Spondylitis, and the blood work was negative, though the neurosurgeon put it as a post surgical dx on my neck surgery. The stenosis and the sacroileitus is all working together and I get so I can't bear te pain to sit onthe toilet and want a catheter. I uderstand the stretching thing too. It rained today and humidity is betterand my back felt better today. I will be so mad if this is like a barometric thing. I need some of granny Clampett's rheumatism medicine! My spine is fusing and the disks have degenerated. I have to get back to the doctor, but don't see how I will manage because of holidays. I saved a bunch of pred so I can go back on if I need to. I hope it is finally stopping. I wondered if this was something like connectie tissue related like muscle stiffness from sclero or UCTD or some other muscle problem that is just happening to happen in my spine and not in the common places. The pain and debilitation level is a little severe for the docs, but they always say tha till they do surgery and its much worse inside than the mri showed.

I hope you have a great holiday and thanks so much for your kind reply. It means a lot. I know you understand and I just hurt so much now. but I think it maybe gettingbetter thanks so your prayers are working.

Hi. I am having pain that starts in my right hip, moves into the groin travels down the inner thigh and around my knee. Feels like someone is trying to saw my leg off. The pain is excruciating. I ball my eyes out. I've been told I have bursitis in my right hip and that I do have a very tiny hernia. The doc sent me to see a physiotherapist. The pain is so bad I can barely get any work done on my hip. I am now being told I will need to see an orthopaedic surgeon and may need an MRI. I've been having this pain for months. I can't bare it any more. Can anyone give me some help to relieve ghetto pain. I take gabpentan and ice as well as stretch and try to strengthen but nothing helps. If anything it feels worse.
Please help