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SI joint, spondylitis. spondyloarthropathy
Hi everyone. I have posted a few times before. I've basically been suffering em chronic low back pain for 4 years. They couldn't figure out what was wrong with me. Last week I was diagnosed with AS, spondylitis or spondyloarthritis in my SI joint. Basically it's a form of inflammatory, degenerative arthritis. There is quite a bit of erosion happening in my joint. My doctor, who is a top spine doctor told me that he had never seen a case like mine, that he's only read about it.
I am 28 years old and he says it's very uncommon to have this at my age and how advanced it is. Anyway- I'm curious if anyone else suffers from this and what they have done for treatment/pain management/really anything that helps them.
I'm glad to finally know what's wrong but there isn't a lot of treatment options out there. There is TNF therapy, which wasn't recommended for me because of the fact it's localized to one area, my age, and all the side effects. My doctor actually recommended stem cell therapy. He was very straight forward with me and said he has never personally used stem cell therapy for what I have, only on ligamental issues but he thinks it could really help me. Has anyone done stem cell therapy?
At this point I am very tired of being in pain. My daily life is very effected. Some days it's hard for me to do simple things like walking and house hold chores. Driving in a car for more than 30 minutes is extremely painful. I'm sure most of you know what I'm talking about, I don't need to continue explaining.
Any advice is very much appreciated!
I am 28 years old and he says it's very uncommon to have this at my age and how advanced it is. Anyway- I'm curious if anyone else suffers from this and what they have done for treatment/pain management/really anything that helps them.
I'm glad to finally know what's wrong but there isn't a lot of treatment options out there. There is TNF therapy, which wasn't recommended for me because of the fact it's localized to one area, my age, and all the side effects. My doctor actually recommended stem cell therapy. He was very straight forward with me and said he has never personally used stem cell therapy for what I have, only on ligamental issues but he thinks it could really help me. Has anyone done stem cell therapy?
At this point I am very tired of being in pain. My daily life is very effected. Some days it's hard for me to do simple things like walking and house hold chores. Driving in a car for more than 30 minutes is extremely painful. I'm sure most of you know what I'm talking about, I don't need to continue explaining.
Any advice is very much appreciated!
I have sacroiliitis, so empathize. My entire spine is degenerating, so not fun. At your age, do anything you can to not start opioid treatment. They work at girst, but tolerance eventually means that even high doses no longer help. And now you have many new problems.
If acupuncture is available - I really think it's effective. And have you asked about facet nerve ablation to stop the pain at that spot. It's worth looking into. I hope you find help. Blessings.
If acupuncture is available - I really think it's effective. And have you asked about facet nerve ablation to stop the pain at that spot. It's worth looking into. I hope you find help. Blessings.
Sounds like the story of my life. I started getting back pain in my early 20's from skateboarding and biking, them was in a car accident and had to have two herniated disks removed, had laminectomy when I was 29 @ L4-L5-S1 which made things worse after time. Decided to just take pain meds, increasing over several years till three months ago had a two level fusion Of same lower disks, 6 bolts (eek!) but sciatica is gone. I couldn't believe it! Took two months to feel better, and another month to get off the pills but feel much better. See a neuroseurgeon, they might be able to help! Pain pills stop working after time and lower your pain threshold so things feel worse than they are after time. I was so scarred to have another surgery but am happy and optimistic it will stick. Hardest thing was stopping the meds.
I have AS and have had SI pain for 30 years. I am considering SI joint fusion with titanium rods. I am going to see a neurosurgeon in April to see if I am a candidate. Maybe you can try this?
I can relate to all the treatments you have gone through, I have done the same. Physical therapy has caused more damage than healing for me.
I had a series of steroid shots only to find out that steroids will weaken my bones but of course no doctor told me this till it was too late.
I am currently getting RFA treatment (radio frequency ablateration or burning the nerve) which has helped tremendously. I have had this treatment to my S-1,S-2, S-3, and piriformis muscle area. I have had this treatment in the past but it seems not too many doctors want to perform this procedure and I have been to hundreds already. I finally found a doctor that explained what damage the steroid treatment does and that is listed in my chart. Currently I have had this RFA treatment TWICE to the piriformis muscle because it did not take the first time. THE NERVE DOES GROW BACK IN TIME. This is not a definite treatment but the best one that works on me.
I think I finally found a doctor who pays attention to my case and my history. Every other doctor would only give me steroid treatments along with drugs. (naturally billing the insurance kept them in practice when I got these shots monthly and NOW damage to my bones have already been done).
I still take morphine for pain issues AS NEEDED but truthfully, I have had positive results with the RFA's. Many doctors do not know about the piriformis syndrome.
I also have had multiple back surgeries over the years.
Don't know if this information would help you but there it is.
Good luck to you and hope you heal well.
I had a series of steroid shots only to find out that steroids will weaken my bones but of course no doctor told me this till it was too late.
I am currently getting RFA treatment (radio frequency ablateration or burning the nerve) which has helped tremendously. I have had this treatment to my S-1,S-2, S-3, and piriformis muscle area. I have had this treatment in the past but it seems not too many doctors want to perform this procedure and I have been to hundreds already. I finally found a doctor that explained what damage the steroid treatment does and that is listed in my chart. Currently I have had this RFA treatment TWICE to the piriformis muscle because it did not take the first time. THE NERVE DOES GROW BACK IN TIME. This is not a definite treatment but the best one that works on me.
I think I finally found a doctor who pays attention to my case and my history. Every other doctor would only give me steroid treatments along with drugs. (naturally billing the insurance kept them in practice when I got these shots monthly and NOW damage to my bones have already been done).
I still take morphine for pain issues AS NEEDED but truthfully, I have had positive results with the RFA's. Many doctors do not know about the piriformis syndrome.
I also have had multiple back surgeries over the years.
Don't know if this information would help you but there it is.
Good luck to you and hope you heal well.
Im sorry to hear that you have been dealing with this for so long. It's frustrating and depressing. I've only been dealing with it for about 4 years.
They did an MRI and saw a strange spot on my pelvic area, so they requested a CT. This was 2 weeks ago. I've had MANY MRI's. I previously had a herniated disc that I had surgery for, then they thought it was facet joint issues, which I had RFA for. Anyway, the CT showed "inflammatory sacroiliitis in the setting of spondyloarthropathy". Those are direct words from the CT. On the CT scan you can see the inflammation and erosion of the joint where it looks like chunks are missing from the bone on either side of the joint.
I've seen 13 different doctors and tried just about everything for the pain as I said above. No one could figure out what was wrong. I kept at it because I KNEW something want right, clearly because of all the pain I was in. I had doctors giving up on me left and right and so believing me. It was a huge relief to finally figured out what was actually wrong. I'm obviously not happy about the diagnosis.
Drugs like Humira and remicade weren't recommended by my spine doctor since it's localized to one spot but again he isn't a rheumatologist. I'm very wary about TNF therapy because of all the side effects and I haven't had children yet. I very much want them but haven't been able to because of my back. I don't know if I want to put that in my body and have children. I will just have to talk to the rheumatologist. There's not a whole kit of treatment options for AS.
Honestly, it's starting to really sink in that this is something I will probably have to deal with for the rest of my life.It's been getting me a bit down. People tell me to be positive and "I'm sure there's something they can do to fix you" but they don't get it...I feel kinda alone. My husband tries to understand and he's been an AMAZING support but if you don't have pain all the time, you just can't completely understand.
I'm sorry to dump all this on you..Like I said, just feel like I don't have anyone to talk to...
They did an MRI and saw a strange spot on my pelvic area, so they requested a CT. This was 2 weeks ago. I've had MANY MRI's. I previously had a herniated disc that I had surgery for, then they thought it was facet joint issues, which I had RFA for. Anyway, the CT showed "inflammatory sacroiliitis in the setting of spondyloarthropathy". Those are direct words from the CT. On the CT scan you can see the inflammation and erosion of the joint where it looks like chunks are missing from the bone on either side of the joint.
I've seen 13 different doctors and tried just about everything for the pain as I said above. No one could figure out what was wrong. I kept at it because I KNEW something want right, clearly because of all the pain I was in. I had doctors giving up on me left and right and so believing me. It was a huge relief to finally figured out what was actually wrong. I'm obviously not happy about the diagnosis.
Drugs like Humira and remicade weren't recommended by my spine doctor since it's localized to one spot but again he isn't a rheumatologist. I'm very wary about TNF therapy because of all the side effects and I haven't had children yet. I very much want them but haven't been able to because of my back. I don't know if I want to put that in my body and have children. I will just have to talk to the rheumatologist. There's not a whole kit of treatment options for AS.
Honestly, it's starting to really sink in that this is something I will probably have to deal with for the rest of my life.It's been getting me a bit down. People tell me to be positive and "I'm sure there's something they can do to fix you" but they don't get it...I feel kinda alone. My husband tries to understand and he's been an AMAZING support but if you don't have pain all the time, you just can't completely understand.
I'm sorry to dump all this on you..Like I said, just feel like I don't have anyone to talk to...
1 Comments
I am going through the same exact thing. Extensive athritis with Erosions in both si joints. been having pain for 5 years. depression sinking in badly thats for sure. i have tried everything. si joint injectons, TNF blockers, pt, chiropractors, i even tried diagnostic rfa injections when they numb the nerves in the area.
One rhemo wants me to try remocade for 3 month.
I'm honestly thinking i am going to try si joints fusion after this because i'm just done with all of this.
Only problem is si joint injections have not given any relief relief at all for me, not even the lido-cane used to numb the joint.
all i know is mri's,ct scans,bone scans don't lie. inflammation and erosion is present.
whatever it is..the damage is already done in these joints.
it would be nice to hear if anyone had si joint fusion surgery for this issue.
Thanks.
One rhemo wants me to try remocade for 3 month.
I'm honestly thinking i am going to try si joints fusion after this because i'm just done with all of this.
Only problem is si joint injections have not given any relief relief at all for me, not even the lido-cane used to numb the joint.
all i know is mri's,ct scans,bone scans don't lie. inflammation and erosion is present.
whatever it is..the damage is already done in these joints.
it would be nice to hear if anyone had si joint fusion surgery for this issue.
Thanks.
Hi again Dkelli. Both of my SI joints are inflamed and they do not know why. Si I have been suffering with this for the last 7 years. I go to the Johns Hopkins Pain Treatment Center as I live in Maryland. They have performed a series of nerve blocks and when the find the nerves generating the pain they then use a radiofrequency current to place a lesion at that nerve site which prevents it from allowing a pain signal to travel to the brain. This is not a cure, just a treatment. It helps but not 100%. I have been on narcotic pain meds for most of this time. Mainly Oxycoton. I recently read about something known as "opiate induced pain syndrome" (google this) and asked my dr. about this and he said it is a problem with long-term opiate therapy. He added the Cymbalta to my Lyrica and I have just dropped the oxycodone to see if my pain is better and not worse. I have to do this for 30 days to find out. But I do not have AS. If you have this, you can also have the RFA (radio-frequency ablation) for pain -management but there's an actual treatment protocol for the condition which includes meds like Humara or Embrel. Diagnosis is made by MRI I believe. Mine just showed inflammation of the SI joints and no signs of AS.
I wish you the very best and, believe me, I feel your pain!
Lisa
I wish you the very best and, believe me, I feel your pain!
Lisa
Thank you LaPerdida for taking the time to respond.
I saw my general doctor today and he recommended that I see a rheumatologist as well. So that is the next step. I am not 100% sure I have AS. That's just what my CT scan said. I want to get as many opinions and options I can from different doctors, that way I can be as educated as possible. They may have technically figured out what is wrong but I don't totally understand it yet.
As of now, I do need 24/7 pain meds to keep me functional. I tried going without a while ago because I was sick of the pain meds but the pain was unbearable and I could not function at all. I also was on Cymbalta a while ago and it didn't do much of anything for me.
I'm continuing to do research on the stem cell therapy because that's what my docs want me to do. My spine doctor was very clear that he has not used it for cases like mine, only on ligamental issues. He did say it was the strongest anti-inflammatory out there and that because it's also regenerative it should help but you are right, I need to know exactly what is wrong with me first.
If you don't mind me asking, what is your diagnosis with your SI joint? How long have you been dealing with it? What kind of treatment are you currently doing other than medications?
Again, thank you for your time and information.
I saw my general doctor today and he recommended that I see a rheumatologist as well. So that is the next step. I am not 100% sure I have AS. That's just what my CT scan said. I want to get as many opinions and options I can from different doctors, that way I can be as educated as possible. They may have technically figured out what is wrong but I don't totally understand it yet.
As of now, I do need 24/7 pain meds to keep me functional. I tried going without a while ago because I was sick of the pain meds but the pain was unbearable and I could not function at all. I also was on Cymbalta a while ago and it didn't do much of anything for me.
I'm continuing to do research on the stem cell therapy because that's what my docs want me to do. My spine doctor was very clear that he has not used it for cases like mine, only on ligamental issues. He did say it was the strongest anti-inflammatory out there and that because it's also regenerative it should help but you are right, I need to know exactly what is wrong with me first.
If you don't mind me asking, what is your diagnosis with your SI joint? How long have you been dealing with it? What kind of treatment are you currently doing other than medications?
Again, thank you for your time and information.
AS is supposedly a very painful condition and I believe it requires treatment and medication by a rheumatologist. The primary symptom is pain in the SI joints and typically pain meds are given along with medication such as Embrel to reduce the inflammation. I have pretty bad SI joint pain but tested negative for AS. I take Lyrica, Cymbalta and Percocet as needed. Often 24/7 pain relief is needed for AS. I made sure this was ruled out in my case. But we both have pain from the SI joints regardless of diagnosis. I would not go with the stem cell therapy or plasma rich therapy or any of that without consulting an expert on your condition. They are not proven effective treatments. In AS the SI joints eventually fuse together and consequently mobility is compromised. My unexpert opinion is to not waste any more time with a spinal specialist if your diagnosis is actually AS. They can do nothing for you. It requires a rheumatologist and they can handle the pain management as well.
I've already done physical therapy multiple times. Basically over the last 4 years I have tried everything for the pain. TENS, acupuncture, pt, massage, injections...You name it, I've tried it. This was before they figured out what was wrong. I've been on narcotics for the last 3 years because nothing else was helping with the pain. Without the medication I would not be able to function and have a life at all. So I've already gone down that road.
As far as the stem cell therapy, I've got to continue to do research about it. It's not covered by insurance and is expensive. Not sure how expensive because my doctor couldn't give me a ball park number due to the fact he wasn't sure how much volume he would have to use. If I decide to do that, he would figure it out before hand so I don't get a big surprise on the cost. I just wanted to see if anyone has personal experience with stem cell therapy. It's very new in the US
As far as the stem cell therapy, I've got to continue to do research about it. It's not covered by insurance and is expensive. Not sure how expensive because my doctor couldn't give me a ball park number due to the fact he wasn't sure how much volume he would have to use. If I decide to do that, he would figure it out before hand so I don't get a big surprise on the cost. I just wanted to see if anyone has personal experience with stem cell therapy. It's very new in the US
I had severe DDD and spinal stenosis before having a horrible accident. I was using opiate medication before the accident with built up a horrible tolerance, so now that i am in excruciating pain it is really difficult to treat it. i would highly suggest, because of your age, to ask your doctor for a referral to a physical therapist first. they have an arsenal of tools to use and some you can do at home, like the TENS unit. I would give this a really good try because long term opiate use is not good for your brain or your body. I would try the stem cell therapy. what do you have to lose??? I was a few years younger than you are when I started opiate medication and took it for years. wish so bad now that I had not done that.
you could google 'using opiate medication for long term chronic pain' and just read up on it before you get to the point of no return.
you could google 'using opiate medication for long term chronic pain' and just read up on it before you get to the point of no return.
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