I have not been here in awhile and don’t know where else to go with this. I have no support system and the rheum that I loved just left the practice to move out of state. They assigned me to someone new that I won’t get to see until February and she is fairly new in the field.
I started Orencia two months ago in an effort to control my symptoms. It has helped my fatigue but I have come down with new symptoms. My lower back has given me extraordinary pain. It runs into my hip and I actually feel it into my left foot. The md said I have sciatica. They did x-rays and saw I have narrowing of a lumbar disc and I am scheduled for an MRI next week. I do have an old injury from over 15 yrs ago when I fell down a set of steep concrete steps and I was out of work for a month. I was treated thru pt and a chiropractor.
The pain has been at its worst for the last two months which is how long I am on Orencia. I struggle to walk across the room and up stairs. I had to quit my part time job because I am not functioning. I don’t have numbness in my legs but I feel as if my leg muscles refuse to work. I do know that my Crp remains elevated. I don’t know if my sjogren’s is playing a part here. I have a spine doc who is familiar with sjogrens and I told him I can’t figure out if that is causing some of my difficulty. He doesn’t think Orencia plays a part in my pain.
Do you think that it is possible that chronic inflammation may be playing a part there? I am so deeply tired of suffering from all this pain and lack of mobility. My teenage son holds my arm like I am fragile and I keep thinking at 63 it should not be like this. My mom had Paget’s and she suffered like this with deep pain and limited mobility before she became wheelchair bound. I don’t want this to happen to me.
I start physical therapy the day after the mri and a few days after that I go back to see the spine guy to map out a treatment plan. I don’t want him to think I am crazy because some of my pain is not classic sciatica. What are your thoughts? Can SJS be playing a part?
Hi Cassi,
Sjogren's is a systemic disease and can cause problems throughout your body, so I think it definitely is related. I'm only 37, and my right hip is starting to hurt now if I walk long distances. The last time I had X-Rays, several months ago, there were several places where they noted that I had joint degeneration, including on my spine. My back hurts sometimes, but it's more of just a soreness and feeling stiff sometimes. The pain comes and goes, and it's not too bad...yet. My vitamin D is also extremely low (it tested at 18, when it's supposed to be around 50). So maybe that is another factor. But fatigue is the really big thing that is really messing up my life right now. I just feel so tired all the time, and I'm fed up with it. I'm way too young for all this, and I feel so weird when all my friends are out bike riding and playing basketball and I can barely walk around the block.
My theory would be that since Sjogren's is systemic and does cause inflammation, it could have damaged your discs over time. I'm wondering if you could have a pinched nerve or something now? That might explain both the weakness in your legs and the pain. That's just an idea, but don't discount the possibility that it is indeed connected to the Sjogren's. I hope your new rheumatologist will be able to help you. If she is new to the field, then hopefully she will take the time to thoroughly understand Sjogren's...it seems like some doctors tend to downplay it and don't understand how severe the symptoms can be, and that it is systemic. It doesn't just affect the glands. I haven't heard of a single person with Sjogren's who only had their glands affected. Every single person I've wrote to and talked to had all kinds of problems throughout their body. Pain and debilitating fatigue at the very least.
I'm sorry, I really wish I knew how to help you more. I'm still new to all this, and I'm learning the hard way how this disease can affect you. It's a pretty insidious, nasty disease...way more than the "dry eyes and dry mouth" that everyone thinks it is. If only that was all it did!! Ha!
The CT Will be pretty telling, as will some SI studies. I suspect it is bad timing. Orencia is pretty effective with IL6 which is an inflammatory inter leukin pretty common with SS. Its encouraging that you are getting some effect already. It takes up to six months for the biologics to get fully on board.
While spinal problems in the spine are not uncommon with SS because the mechanism that produces Cerbral Spinal fluid is part of the exocrine system, its very unlikley that it would localize.
Sorting it all out is tough. While SS, is systemic it is still a disease of the exocrine system, of course the exocrine system is pretty systemic: lungs, digestive track, csf system etc. Extraglandular disease usually involves the myelin system. RA is not uncommon, but remember the areas of the joints effected are also part of the exocrine system.
So how is your doc addressing the elevated CRP? Ultimatley the Orencia should do it, has it dropped any? The spinal specialist will help as will the PT. Whether the siatica pain is SS, an old injury, or common spinal pain that gets 80% of folk several times in life, it doesn't matter much. Taking care of the matter does. That kind of pain is horrible. Fortunatley there are many tools that can help. All you can do with any of this stuff is take care of it as it comes up.
Thanks Gateway for your input and support. The spinal doc’s theory is that I have a pinched nerve.
Tj1 I don’t have RA so that is one lucky break. I only have primary Sjogren’s. My rheumatologist left the practice so I have no one to go to until the next opening which is in February with the doctorthat I knew nothing about. My last lab did show a slight drop in my CRP. She put me on a temporary dose of prednisone for a few weeks but that has been over and done for the last month. I still am very uncomfortable.my hope for some relief lies with this spine guy. I just have to wait for the MRI to be done next week. I have pain in my left foot my heel in particular. I thought it was plantar fasciitis rearing its head but now I’m not sure. To add to the mess my neuropathy is flaring and my fingertips are very painful. Merry Christmas from my immune system LOL!>
Btw what is an SI study?
tj1 said:
The CT Will be pretty telling, as will some SI studies. I suspect it is bad timing. Orencia is pretty effective with IL6 which is an inflammatory inter leukin pretty common with SS. Its encouraging that you are getting some effect already. It takes up to six months for the biologics to get fully on board.
While spinal problems in the spine are not uncommon with SS because the mechanism that produces Cerbral Spinal fluid is part of the exocrine system, its very unlikley that it would localize.
Sorting it all out is tough. While SS, is systemic it is still a disease of the exocrine system, of course the exocrine system is pretty systemic: lungs, digestive track, csf system etc. Extraglandular disease usually involves the myelin system. RA is not uncommon, but remember the areas of the joints effected are also part of the exocrine system. So how is your doc addressing the elevated CRP? Ultimatley the Orencia should do it, has it dropped any? The spinal specialist will help as will the PT. Whether the siatica pain is SS, an old injury, or common spinal pain that gets 80% of folk several times in life, it doesn’t matter much. Taking care of the matter does. That kind of pain is horrible. Fortunatley there are many tools that can help. All you can do with any of this stuff is take care of it as it comes up.
Years ago I suffered from lower back pain that traveled into my leg and pushed it aside as sciatica pain. I went to a chiropractor who took ex rays and treated me accordingly, I had a pinched nerve. Within a week I was able to walk normal again. I continue to have issues but none so severe. A pinched nerve could be the cause but be sure you find a highly recommended chiropractor who considers all circumstances and reviews your test results before proceeding. I moved to Kansas 3 years ago and so far have been reluctant to find a new Chiropractor, though I’m sure I could benefit from it. Good luck and although I’m sorry you all deal with this pain and fatigue daily, I do appreciate knowing I’m not alone because sometimes I feel like it and feel useless when my Sjogrens flairs up.
Hey Cassi….wanted to check in and see how you are doing. Did you get the MRI yet? Any relief from the symptoms? Hoping you have a good New Year. Keep us posted!
EnjoyLife thank you for checking.
I had my MRI and the results were not good. Every lumbar disc has an issue or two. I have three herniated discs, a bulge, a tear and spinal stenosis. I have extreme difficulty getting dressed and it is difficult to stay on my feet. I can’t even get out of bed easily. I found that it is easier to roll sideways, land on my knees and then push myself up. The good news is that the sciatic pain has decreased. I go for a shot to my spine on Monday so that I am able to tolerate physical therapy.
Thanks for asking.
Oh my goodness, hon. Sorry to hear. I hope they can start getting you some relief though, now that they know what it is. Sending you gentle hugs.
Whats your spine guy saying? Not much they can do about the stenosis, which certainly explains the pain. The bulging and even herniated discs can cause some symptoms that usually resolve on their own, and even faster with PT. Heres hoping the injections resolve things quickly. Lumbar discs really take the brunt of things. BUT the good news is that they respond the best and the Fastest to treatment. make sure the first thing the PT teaches you is a good lumbar stretching routine. Done several times a day as you are able to tolerate will make a huge difference. You might ask about using a TENS unit as well. It can really help with that nerve pain. Here's to a better 2015. The orencia should help, but if it doesn't there are others to try...........
Cassi440 said:
EnjoyLife thank you for checking.
I had my MRI and the results were not good. Every lumbar disc has an issue or two. I have three herniated discs, a bulge, a tear and spinal stenosis. I have extreme difficulty getting dressed and it is difficult to stay on my feet. I can't even get out of bed easily. I found that it is easier to roll sideways, land on my knees and then push myself up. The good news is that the sciatic pain has decreased. I go for a shot to my spine on Monday so that I am able to tolerate physical therapy.
Thanks for asking.
Tj1 thanks for your reply. His first step was to set up the injection which is set for 1/5. I had my phys therapy eval done yesterday. The first thing the therapist taught me was how to get out of bed lol. He said I am leaning forward and to the left and we need to work on that. With all this pain I can’t help it. The recurring episodes of myosotis have taken a toll on my muscle strength and he wants to build on that so I can stand straighter. We covered deep breathing and talked about a plan.
I like this place because they only do PT with a max of 2 pts at a time. The last time I did pt at a different facility the therapist was dismissive and the place was overcrowded…can’t wait to get all this started. My pain level has gone down from a 7-8 to an average of 4-5.thank God I stopped working.
Thanks for your response.
tj1 said:
Whats your spine guy saying? Not much they can do about the stenosis, which certainly explains the pain. The bulging and even herniated discs can cause some symptoms that usually resolve on their own, and even faster with PT. Heres hoping the injections resolve things quickly. Lumbar discs really take the brunt of things. BUT the good news is that they respond the best and the Fastest to treatment. make sure the first thing the PT teaches you is a good lumbar stretching routine. Done several times a day as you are able to tolerate will make a huge difference. You might ask about using a TENS unit as well. It can really help with that nerve pain. Here’s to a better 2015. The orencia should help, but if it doesn’t there are others to try…
Cassi440 said:
EnjoyLife thank you for checking.
I had my MRI and the results were not good. Every lumbar disc has an issue or two. I have three herniated discs, a bulge, a tear and spinal stenosis. I have extreme difficulty getting dressed and it is difficult to stay on my feet. I can’t even get out of bed easily. I found that it is easier to roll sideways, land on my knees and then push myself up. The good news is that the sciatic pain has decreased. I go for a shot to my spine on Monday so that I am able to tolerate physical therapy.
Thanks for asking.