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

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cured4real?
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Date Joined Dec 2005
Total Posts : 1942
   Posted 6/23/2007 9:34 PM (GMT -7)   
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.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 6/24/2007 11:37 AM (GMT -7)   
I have a similar problem on the right and my doctors all are saying a single nerve damaged can cause the problem. I feel like an ice pick is being driven into the area where thigh, hip, and groin meet. The pain radiates down toward the knee but stops there. The thing is it follows a nerve path which makes it very clear I have nerve pain. See if you can find an online picture of nerve pathways in the lower body so you can tell if that is how your pain runs. If so then maybe the doctor you need to see is a neurologist who is open to the idea that lupus can attack the nervous system. Also I will be getting some kind of epidural injection July 9th to try and stop the pain and will let you know how it goes. For me I can no longer walk normally. My leg gives out frequently and falls asleep if I sit for too long. I hope this helps you feel less alone in this. I have no clue about lymph nodes butmy xrays and mris were all normal so the hip itself is not damaged- no arthritis in it. They checked the spine as well and nothing to account for it there either. That is when they send you for things like pain blocks- at least my doctors do because they believe me about the pain and have been giving me heavy duty pain meds and do not want me hooked.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


cured4real?
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Date Joined Dec 2005
Total Posts : 1942
   Posted 6/24/2007 8:05 PM (GMT -7)   
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.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 6/25/2007 2:17 AM (GMT -7)   
I wish mine came and went. I have constant unrelenting pain though it does get worse at times and then ease back some. Right now I could cry.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 6/25/2007 2:19 PM (GMT -7)   
(((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.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


lululancashire
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/16/2008 12:09 PM (GMT -7)   
Hi wondering if anybody can help please??
for the past 5 months i have been experincing really bad pain in my hip which feels like its being crushed at first i got a really bad case of it and i couldnt stand up or walk the pain was that bad i had to go to casualty and they said it was a kidney infection and sent me away which i didnt believe. it happened again 3 weeks later and again got rushed to hospital where they said it was a sti and to get a test before they would do anything else i was horrified that just because i am a teenager they would blame it on that so i had the test to shut them up and it came back clear like i said it would. Now the pain has spread from my hip right down my leg to my toes i am in agony every day and some days the pain is so bad i cant stand up to get out of bed and the rest of the time im using crutches to get around. The doctors arent taking me that seriously and keep putting me on strong painkillers that make me sick and dizzy all day but dont do anything for the pain im at my witts end has anyone experinced anything simiular and do they know what it is thank you

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 12/16/2008 3:08 PM (GMT -7)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5843
   Posted 12/16/2008 8:28 PM (GMT -7)   
Has anyone else had an MRI to check into what's happening? And/or GI & GYN investigations? Both are in the area where my pain seemed to be coming from.

That's what we did with mine and it was clear that no bone damage was occurring or anything else (not GI or GYN, checked out both throughly) -- it is basically general lupus inflammation (& maybe some age or fibro involved). So I have pain meds for when it hurts - fortunately mine is really mild now but it has it's spells.

Since yours sounds like it travels down your leg, I wonder if a neurologist might be helpful, or as someone else suggested, a chiropractor?

I hope you find some relief soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 8mg), Piroxicam, Xanax, Trazodone, Boniva,Wellbutrin, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Post Edited (Lynnwood) : 12/23/2008 10:00:52 AM (GMT-7)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 12/20/2008 8:21 PM (GMT -7)   
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.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 12/20/2008 8:42 PM (GMT -7)   
Hi Marji,
 
Have you ever been tested for Ankylosing Spondylitis?  It's an AI disease that literally fuses the spine to the lower sacral area of the back.  The entire spine itself can also be fused together.  I do believe it would show up on an MRI though.  I know for sure it would on a bone scan.  A blood test can be done to see if you have the antibody. 
 
So it does feel better with prednisone eh.... Hmmmm.  All I can say is that I have wicked bad lower back pain that can be so debilitating that I can't function properly with "toilet duties" if you know what I mean.  Can't even stretch back the tiny bit to wipe.... Sorry, gross.  I was tested for AS, but it's all negative.  For me, it's sacroiliits (inflammation of the sacroiliiac joint), and my Fibro.  Great combo.. NOT. 
 
I wish I had more ideas for you too Marji.  You're right, you can't keep living like this. I think your rheumy needs to chill about the prednisone.  If you need it, you need it.  Good grief. Doctors baffle me sometimes.
 
I wish you a lovely Christmas too Marji.  I wish so much you didn't have this pain and immobility to deal with.  I'll be praying for you.
 
love
ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 12/21/2008 11:56 PM (GMT -7)   
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.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 12/22/2008 10:56 AM (GMT -7)   
Hi Marji,
 
So you do have sacroliitis?  That's what the pain is then.  I have the exact same kind of pain in my groin, thighs, lower back and hips.  It's the most debilitating pain I have in my body.  Combined with your stenosis, I can't imagine how awful this must be for you.
 
A couple of things that have worked for me to lessen the severity of the pain and give the back a break is that I've got an inexpensive 3 inch memory foam mattress cover.  My body gets moulded into this thing and no pressure is put on any joints!  It's really good.
 
The other remedy is a 10% cortisone cream that I apply to my back and hips.  It's called Diflucan.  Prescription only.  It's super strong steroid cream.  Works really well.  It can usually get me out of a flare up in about 2 days.
 
I don't know if you've tried these, but it's worth mentioning.  Oh Marji, I have the barometric problem BIG TIME.  I'm a living breathing weather station.... It's horrible.  I truly believe that the barometric pressure changes really wreak havok on our bodies.  You're not alone in this one!!
 
I'm praying for you Marji,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Whobee
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/2/2013 8:38 AM (GMT -7)   
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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5843
   Posted 11/2/2013 3:23 PM (GMT -7)   
Agreed, see an orthopedist - mine did an MRI to rule out bone disease, then did a cortisone shot and physical therapy to deal with a tendonitis/bursitis issue.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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