Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I've had 9 or 10 Enbrel shots now. My RA is better but it's not the miraculous remedy it was before. I can still feel the same two enlarged knuckles (they are a tad stiff, spongy, and crunchy) as I've always had with the exception of direct steroid injection and the first time I was on Enbrel.
I am definitely better - not a miserable cranky lady, but I expected more. I know I still have some time for Enbrel to kick in 100%, so we'll see.
The hip bursitis is better. So that's pretty wonderful.
But - what I thought was part of RA and bursitis is the lower back (really almost the bony part of the top of the buttocks) is still painful. It's symmetrical. It might hurt in the morning but definitely hurts after standing 30min or so. It's worse than it was a couple of years ago. I shift my weight back and forth but MUST sit down and even lean forward to alleviate the pain. After 3-5min, I can go again, standing or walking.
I have muscle weakness and pain through the outer and front thigh too.
I assumed all this was weak muscles or bursitis or even RA related, but now I have no idea.
Looking for any clues.
I already scheduled an apt with an Ortho. I scored because they decided to work on Monday so they had open appointments since the decision...just a few days wait. And my next Rheum. apt is one week later. this ortho is a DO... Specializing in Physical Medicine & Rehabilitation, Pain Management, ESI Injections, and EMG/NCS.
His interests say "neck and lower back"...so I hope I've chosen well.
I'd love to hear any thoughts you all have. I figure if it was AS, the Enbrel would have helped. That it's symmetrical has me baffled. Thank you!
I am definitely better - not a miserable cranky lady, but I expected more. I know I still have some time for Enbrel to kick in 100%, so we'll see.
The hip bursitis is better. So that's pretty wonderful.
But - what I thought was part of RA and bursitis is the lower back (really almost the bony part of the top of the buttocks) is still painful. It's symmetrical. It might hurt in the morning but definitely hurts after standing 30min or so. It's worse than it was a couple of years ago. I shift my weight back and forth but MUST sit down and even lean forward to alleviate the pain. After 3-5min, I can go again, standing or walking.
I have muscle weakness and pain through the outer and front thigh too.
I assumed all this was weak muscles or bursitis or even RA related, but now I have no idea.
Looking for any clues.
I already scheduled an apt with an Ortho. I scored because they decided to work on Monday so they had open appointments since the decision...just a few days wait. And my next Rheum. apt is one week later. this ortho is a DO... Specializing in Physical Medicine & Rehabilitation, Pain Management, ESI Injections, and EMG/NCS.
His interests say "neck and lower back"...so I hope I've chosen well.
I'd love to hear any thoughts you all have. I figure if it was AS, the Enbrel would have helped. That it's symmetrical has me baffled. Thank you!
I'm glad you are getting somewhere with Enbrel. I'm curious as to whether anyone has gotten a second-time miracle. I know I'm not doing as well on Orencia after having to quit it for month. Better than nothing, but not as good as before. When does Enbrel reach it's peak, 3 or 4 months?
Good luck with the orthopedic. From the experience I've had with osteopaths they're all over the map. Some are really New Age-y, all herbs and homeopathy, while others are by-the-book evidence-based medicine sorts.
Just had some of the same symptoms.
Went for SI block last week.
PM doc had determined years back I had some problems there. Tolerated it until recently when it just got way to far out of control & fast.
Put this in another post for you as spotted this one after responding.
I did ask 2 doctors at PMs. Both stated RA can get into that SI joint.
It's not as common as other joint problems but yes indeed it happens.
My RA doctor never directly answered when I ask her the same.
She avoided any involvement with any area of the spine.
Do have some relief. Not as much as I hoped but suspecting there's more then one problematic or flared area.
Doctor said the block would be a diagnostic test also to see what area if any gained relief.
Lower back, bum area & some leg foot relief.
Did allow me to put the cane aside in morning.
Very curious to see what your dr has to say.
As always wishing you the best of luck in gaining answers & relief.
Sammy
I read that there is symmetrical bilateral and just bilateral (but not symmetrical)...don't understand that. The one connected to RA is bilateral but not symmetrical.
After I stand in the kitchen cooking and putting dishes up, my lower back/bum is aching. It's so ridiculous to me. I used to be in same pain but it would be after a much longer time standing (like chatting in the yard for 30min or so standing up). I'll report any answers I get.
Good luck at the ortho tomorrow. Let us know, I have the exact issue and maybe your diagnosis would help me!
Juls
Back from the doctor - and *drumroll please*..........it's Osteoarthritis. Got full set of xrays plus examination. I was sure it was going to be SI joint but it's not. The doctor was able to produce the pain by contorting my body (leaning backwards and to the left and right).
I go back on Thursday for an xray guided steroid injection into left side, then again a week later for the same into right side.
The steroid injection is both diagnostic and therapeutic. If it relieves the pain, we'll know it's an accurate diagnosis. At that point, I'll have to decide if I want to have the nerve endings there cauterized.
Anyone have experience with this stuff?
On a positive note, it explains why the Enbrel isn't relieving pain in that area.
...and what?!!! cauterizing?!!! Never heard of that one!!!
...and I thought they said that biologics are showing wonderful improvements in OA and are to be the new treatment for OA as well?!!!
Maybe things will feel better once it heats up some...it is really painful right now because of the weather and right now my neck is killing me !!!
600 mg Ibuprofen and naproxen and sulfasalazine spread throughout the day and heat pads on painful spots and topicals and plenty of water. Music therapy helps too
stay warm everybody
Could feel it bothering the right side as time went on. Honestly it progressed so quickly into the leg & surrounding areas it took me by surprise. Had some problems before there but nothing to that degree.
When dr examined or palpated both sides the right was really tender.
So it was decided then & there to do both.
Now I wonder if just the left was done if I would have more relief on that side. If I understand correctly (,that's a big if... ) less is used when doing multiple areas as they can only use so much so it's like divided to inject where needed. A question I'm going to ask just to satisfy my mind. At this time I feel any pain & problems are RA related.
Oddly enough even though I can now walk on that left leg in the mornings my knee has come close to buckling on me. No warning so watching it.
My RA dr explained RA effects both sides(bilateral) & unless it's effecting both she does not feel it's RA related.
Now I am not sure I fully agree. Questions about that such as one side can take the lead with the other not showing as many problems.
Can take time for the other side to catch up so to speak.
My thoughts.
Just think every thing cannot be written in stone.
If they have so many unanswered questions about this disease can't other possibilities exist? Also pre-existing problems. Couldn't that lead to more risk for inflammation, destruction, pain... Putting that joint at more risk? Again Just thoughts.
I know many prefer heat but I ice that area & for me it does seem to help.
Also most painful in the bum & lower back came from sitting. Had it standing but sitting for any real length of time made it so sore I could lay in the bed on my backside.
Very curious to see what your doc has to say.
Of course wishing you relief.
Sammy
I can't take any Nsaids til after procedure and that is bothering me. I'm taking Tylenol but my back and legs ache. I know I can deal with it but sleeping or even falling asleep is so hard.
Thursday will be here soon so hopefully, It won't be any worse than other steroid injections I've had.
The cauterizing (which I'm not getting until it's deemed appropriate and necessary) works for about a year or two for most people, until the nerves repair themselves. Interesting stuff!
Where exactly did he inject? (Assuming had it done yesterday)
How do you feel?
My Last insurance was the same way would not pay for both injections in same visit. What a waste for patient & doctor. Not to mention seems it would be more costly in the end.
Thinking here cauterizing is the same as a Rhizotomy,
I have my cervical done. After successful blocks we moved onto a longer lasting solution. Which for me worked very well. Beats going in multiple times per year & less steriods in the end.
Like everything weigh pros & cons of injections VS cauterizing.
Put that off for years till the assistant ask me why. Fears of course.
Procedure may be different but recovery & outcome is basically the same. Procedure time a little longer but not by long.
Had it done last 2 years now & I won't hesitate this year. In fact thinking my next appointment I'll ask about scheduling it to stay a head of the pain.
If your injections are successful at least you know there's that option.
Nice to have options.
Mr doctor said the same thing. The injections would be diagnostic as well. Part SI joint & thinking part hip. Although could be wrong so trying not to think to hard.
Not to mention thinking to hard just adds to exhaustion if I get past the brain fog. That's a huge if..
Of course I'm hoping you have relief. Lord knows you deserve it.
Let us know how your doing.
Sammy
I have very SERIOUS white coat syndrome. My bp is normally normal - like 119/76 or maybe as high as 130/85 when excited, but at the doctor I pull AMAZING numbers for them all because I'm scared of the bp machine. So I was 160/95. They went ahead and did the injections.
The down side - they wouldn't let me leave because my bp was still high. They assumed I was freaked about the procedure and bp would decline after...but as they checked each 10min, I told them it was going to get worse because I was so upset about the bp! Finally went a few points lower and they let me out.
DAMN I was mad! At my own self. I cannot UNPSYCH myself. Any help on this???
I tried thinking of my blessings. Tried thinking of my favorite relaxing place. Tried telling myself that this was all stupid and I was holding up the situation. Nothing worked.
Doc gave me klonopin to take for the next one next week and my husband will drive me. I halfway feel like I'll be able to outsmart the klonopin and pull amazing bp again. UGH.
When I got home, bp had gone down to 149/69 and then before sleeping it was 138/72. This morning, it was still 132/78 so it's messing with me a little because I'm still mad.
I cannot tell any difference yet on the injections. When I get steroid injections in fingers/shoulder/wrist, I think it takes 2 days to notice. Any idea how long the wait will be? On a positive note, all RA is quelled and calm. I think the Enbrel is working and the steroid may have already helped the two trouble spots.
Thanks for asking about me. It's always something and it's so frustrating when it's one's own mind controlling the situation.