I joined this board specifically so I can see if anyone else is having the same problem that I am right now. I have had Sjogrens for a few years and just recently my joint pain has gotten significantly worse. My hips hurt so much, near the front. MRI is negative so we still aren't sure what it is. My legs ache so badly when I get home, especially after a long day on my feet (I'm a nurse). Anyone else have this same problem? Any suggestions on a solution? I take the Etodolac, Tramadol and Tylenol all day every day. Sometimes the pain in my hip is so bad after driving or sitting in the same position for a while I can barely walk.
I'm just afraid I'll have to stop working and I'm only 30. Any thoughts would be greatly appreciated! Thanks so much!
I am sorry that you are in so much pain. Just wondering if anyone has checked you for inflammation in your hip area? If you aren't already aware, MRIs do not show inflammation only a bone scan does.
I have chronic excruciating pain in my hip and SI joint areas and had CTs and a MRI but noting significant showed up. Then I had a bone scan and it showed severe inflammation. Since that time I've been getting cortisone shots under fluoroscopy for about 6 years now and for me they help immensely. In my case, I get my shots at the hospital with a radiologist administering them.
I really hope you get some relief soon.
Daisy
Welcome scflores30, I can identify with the almost crippling hip pain that you describe, as when I was in school 2 years ago and doing my clinical training as an x-ray technologist I experienced the same. I wasn't yet diagnosed with Sjogren's and I had an hour and a half commute each way to the hospital and was hustling on my feet all day. At the end of the day, my hips were stiff, aching and I could barely walk.
It wasn't until I was formally diagnosed with Sjogren's last January and put on Plaquenil that I began to feel relief. I still have to use Tylenol to manage the headaches, as well as Restasis for dry eye & Evoxac for the dry mouth. My hip pain is 70% improved from being on Plaquenil for the last 6 months.
Sjogren's is considered a connective tissue disease and it affects the cartilage in our joints. I have also had MRI's which have shown no abnormalities.
Do you have a rheumatologist who is treating your Sjogren's? I can honestly say that without Plaquenil I would not be able to function whatsoever. Please don't worry about your ability to be employed, as if you can find the right doc to prescibe you the appropriate medications to help with your symptoms than you will be okay.
Hang in there!
Thanks so much for replying! I too am on Plaquenil and have been for over a year. I don't think it has given me much relief though. Without my anti-inflammatories I wouldn't be able to work period. Thats interesting about the bone scan, I'll have to mention that to my doctor. I had a rheumatologist but am looking to find a different one. Its comforting to know that your MRI's came back negative too. Was starting to think it might just be in my head!
While standing at the top of our basement stair my leg broke and I fell down the stairs and broke my hip. There had been pain in my legs for weeks prior to the break.
X-rays may not show a problem. Here is my standard welcome tips:
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.
With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three Ss of Sjogrens.
Could it be sciatica? I have probs with sciatica and it can be very painful, sitting for a length of time as during commute will aggravate it.
My main joints if pain in order of the most painful:
Right ankle
Left knee
Left hip
Back
Shoulders
Wrists
No rhyme or reason...
Hugs to you, I do understand trying to move after sitting! Are you taking plaquenil or have you tried it? It doesn't make it go away but it can help
Hello,
Everyone's body is different. Don't listen to me: it is better to listen to your doctor. That said, the following information might provide you with questions to ask you doctor, or may guide your choice of options if the doctor provides you with any.
Try 200mg extended release tramadol twice a day = 400 mg/day ER Tramadol
with 100mg Lyrica three times a day = 300 mg/day Lyrica
----------------------------------------------------------------------
If that doesn't work, replace tramadol with the long and short acting oxy... medicines from a Pain Doctor if you can get them, and still take the Lyrica.
---------------------------------------------------------------------
These are temporary fixes, that might keep you going for another 2 or 3 years if you can get the prescriptions, and tolerate, the medicine.
I would say: "Hope for the best, and plan for the worst".
"Planning for the worst" means facing stopping working because of disability in the foreseeable future, ranging from now to three years. It is good to at least have some plan and know your options. Perhaps you could transfer to a desk job, or work part time, or something.
I say that because I didn't know what to do when I could no longer work, and my fall from employment was ungraceful and prolonged as a result. I also came extremely close to choosing a disastrous option because by then I was sick and didn't know what was going on because I didn't realize that my Sjogren's was going to be progressive and retire me, ready or not. Of course, your Sjogren's may not be progressive.
In my experience, unless the hip pain is from an injury, physical therapy does not work very well at all, and may just make you more tired. In my experience (only) things like icing joints can work, but only for a short period of time after you remove the ice, so you almost have to apply it constantly to sustain relief. If multiple joint hurt, applying ice gets unsustainably time consuming.
Try to take as little medicine as possible - just enough to kill the pain - so that the course of treatment will last longer. Eventually you will build up tolerance to any of these medicines except the Lyrica, so taking "weekends off" the medicine, or taking just enough and not more, extends the course of treatment by slowing down the tolerance build up. Do take enough to kill the pain though, and it may take a lot. Then side effects can potentially become a major issue, however, the two treatment plans above might potentially have manageable side effects.
Nurses on strong pain medicine are highly suspect, whether the medicine use is legitimate or not, in the eyes of some medical organizations or some supervisors, as you know.
HI and welcome!
I had terrible hip pain that sounds similar to yours. I also had a cortisone injection that has made a huge difference. It didn't help immediately, but I felt the effects within a couple of weeks.
Worth a try.
Hugs
KAthyx
Yep, having a flare of it right now. Going for nerve conduction testing this week as effects are getting bad in my legs.
For years I had horrible hip pain that doctors attributed to everything and nothing at all. I thought I was going to end up in a wheelchair. Tests came up negative for this, that, and the other thing. Sitting, driving, and walking on hard floors made it really bad - gentle movement on soft footing seemed to help (like moderate hikes through grassland or forest).
What finally DID help was getting treatment for Lupus/Sjogrens, and seeing a sports-oriented PT who specialized in hip/lower back injuries (he works with lots of golfers). At this point the best guess is that years of untreated autoimmune disease messed up my S-I joint, and slowly my whole pelvis got over an inch out of whack, which made EVERYTHING hurt (but especially my hip).
I went through one 12-week course of treatments (once a week, plus exercises to do at home) and a year or so later, another 8-week course. He had to break up a bunch of scar tissue that had formed along one side of my spine because my body was trying to compensate for the misalignment - it was technically "massage", but not the nice kind, LOL - it was PAINFUL!!!! But it worked....I have been pretty much pain-free for the last couple of years. I think it's a combination of the PT and getting the disease process under control with medications. It is not unusual for autoimmune disease to attack the S-I joint and cause problems.
Lately it's been bothering me again a little, but now I kinda know what it is and how to treat it. If I can't get things under control at home, I will go back to the PT and have him check it out for me again.
There a zillion reasons for back/hip pain, and it can be hard to track down, but that was my experience - hope it helps!
I am so glad, I use that loosely, to see that I am not the only one with this hip and sacral pain. Yes, this is crazy. It hurts so much in the morning I can barely walk. Sound familiar? My ankle on my right leg also feels weak now, it causes my foot to get muscle spasm by the end of the day... does that sound familiar? The lower portions of my arms and legs tingle....it is maddening. >:( Sorry for the whine CK
CMK have you had an MRI to see if you have a pinched nerve somewhere?
I also have hip pain. Its so bad I use a cane to help with balance due to the pain. I also get dizzy spells. I cannit walk more than 1/4 mile without my cane. Even with the can when I get home I cant walk up the stairs. I have to sit down and scoot up them. Im 40 & feel like Im 80.
My MRI also showed nothing. But hiw could that be when Im in this much pain and stiffness? I dont take anything for pain as I have to have my pain meds, even tylwnol compounded due to corn allergy and wheat allergy. They are very expensive when compounded. Urg.
Quote from: Velcro on August 26, 2013, 07:18:29 AM
CMK have you had an MRI to see if you have a pinched nerve somewhere?
DOH! I just seen where you did...sorry.
Hi all, went to PT today for the hip pain (nerve testing on Wednesday).
He put me through several tests bending this way that way and so on. Then he had me lay face down on the table and pressing on the lower center of my back. Bingo! The harder he pressed the more excruciating the pain was in my hips.
Strong possibility in his mind that it's stenosis in my lower back which he said would explain why it's worse if I walk a long time or sit or stand too long. I had an order for an xray which I just had not gotten done yet. He encouraged me to go so I went this evening. Hope to find out about the results on Wednesday.
He also said I am extremely tight so gave me stretching exercises and one to strengthen my core (II used to do that with yoga, but stopped as it was bothering my upper back in which I have stenosis and degenerative disc disease).
I will be relieved if the issue is stenosis as I know with the right treatment it can be mitigated. We also have a great surgeon in town if it should get to the point of needing that level of treatment.
H all, no stenosis, just arthuritis like my spouse's name. Undergoing PT to help strengthen my core and hips, a bit painful, but seems to be helping.