Sacroiliac joint helps?

General
1

My joints and connective tissues are one of my biggest challenges. Is anyone more up to date on best possible self care and any newer treatments for SI joints?

I have to use a cane already, but when one side locks up and then the other, I'm become immobile. Walking reduces me to tears, even with the added support. The most current treatment I have found available is steroid injections, and that's contraindicated for me.

I need to be functional!

Thanks for any advice you can share.

warm loving hugs,

Louise

2

Louise, so sorry I know how painful that is. The only thing I know that helps a little are some yoga moves, but it sounds like you are beyond those working. My brother and I get the shots and he is having surgery in January. Do you ever go to a chiropractor? Sometimes they can help and acupuncture. It is costly and doesn't last long for me. So I will probably have to have surgery soon myself! Not looking forward to it at 65! My brother is 70, he can barely walk like you.

I wish I had a better answer for you.

Sending you big warm hugs!

3

Hi Louise! I too have problems and will be having fusion from L3 to L5. I don't know how far advanced your problems are but my SIL has problems and she is seeing a chiro who has a PT program at his office and they are stretching her gently to give the vertebrae the space they need again. I don't know what it is called but I can ask and maybe you too are to advanced with your problems to try this. If you want me to ask her, I will be glad to do that. I know this chiro is unique in this also. Hugs, Reet

4

Hi Ohso!,

One thing my rheumatologist said to me that if i did not want to end up like most of the patients in his waiting room the one thing i could do was to keep moving. He was right especially now as I am aging.

I am sure that your doctors have discussed all the pills you can use to help slow down the inflammation process. NSAIDS, biologics, the cort shots like you mention...i get if you use too much they destroy your joints. Same as taking the steroid pills will destroy your body. One thing i have not looked into is hip replacement...but i know for other replacements they want you to wait as long as possible. Also have you tried the voltaren gel or emu oil? Both help my hips plus TEN's unit has lately been great relief with a electric throw over me to warm my hips. I am surprised how much it helps!

I think if you have not worked with PT in year or more than it would greatly help you to start with one. Basically they need to work with you to strengthen the muscles around any painful joints plus core area.

I would think that a warm pool might be the best place to start. Water helps support you, easy on your joints plus give your muscles a workout. From there he can move you slowly to more intense workout.

This will not be easy so i hope you can find something that you would like to do that involves moving..something you love to do! For me it is being out in nature! It heals me and soothes my soul! For you well, could be from walking, biking to ballroom dancing! Just being able to walk downtown and people watch or gaze at other's gardens! Take photos of beautiful places and people! Get a dog and walk it daily because all dogs should get a walk...they do not like being housebound anymore than we do. Just something you feel great joy from doing it!

I also use hiking poles...and have since my thirties as well as snow poles in winter! They work your arms out while walking/hiking or snowshoeing, skiing....and do not feel so self concious about them. i do have canes if i need them...i just keep them in the car. I try my best not too but learned hard way about not using them when i really needed them, you fall down!! lol!

I am truly sorry about how much it hurts BUT I also believe that with right PT person and you really having the desire you can walk again without use of canes on most days. I even believe if you like to hike or ballroom dance you will be able too!

I say measure an area before you start how long and pain average. In 3 months do it again and i bet you will be so improved, same in 6 months and you will be amazed and in year you will wonder why waited so long to get back in shape that now the world is yours again!! You may not be able to move like all around you or run a marathon but you will be greatly improved!! I bet the canes will get dust on them!!

You take care and sincerely hope that you find what you love to do as to movement!! Me...i am thinking about getting a trail pony...i love high Sierra's and like you walking is getting harder...but at least with trail pony..i can walk/hike in and ride out! Besides I love horses as much as love dogs...always wanted another..midget mule be perfect! Carry some paints as well as a camera and perfect day in my life! Maybe a book by the stream for bit too or in flowered meadow!

5

Wow, by 70 I will be needing a mechanized suit to get me around. I'm a couple of decades younger! I broke my sacrum long ago, and have 4 different spinal challenges going on, head to tail bone. My fusion was a breeze, the worst part the horrible hard brace in the summer heat. If they put you in one, the plastic corners and edges can be molded with your hands so they don't poke you anywhere. and silk scarfs underneath to alleviate chaffing help , would wear one, switch out and wash the first. I hope your brother and you both do well with your surgeries.

A honest well trained chiro won't go near anyone with a fusion to do adjustments. My physical therapist (with doctorate) got me back to moving after the long months being braced around the clock, but he is very special and uses a number of practices, including acupressure. He heads up his own spine and rehab clinic.

hugs back, and thanks, Louise

geneva21 said:

Louise, so sorry I know how painful that is. The only thing I know that helps a little are some yoga moves, but it sounds like you are beyond those working. My brother and I get the shots and he is having surgery in January. Do you ever go to a chiropractor? Sometimes they can help and acupuncture. It is costly and doesn't last long for me. So I will probably have to have surgery soon myself! Not looking forward to it at 65! My brother is 70, he can barely walk like you.

I wish I had a better answer for you.

Sending you big warm hugs!

6


Reet,

I have same thing in my hips but AS throughout my spine. He should make sure seeing chiro is okay with his doctor. I was told not to ever use one with my disease. Also stretching the spine is a type of traction...they did to me years ago when i ruptured a disc. It was not done gently ...gently i can see how stretching our backs where they use to be would be beneficial! I do believe that chiropractors are generally great for helping back problems. I found out that it could be harmful by saying i had appt with chiropractic doctor. There are devices you can buy that does this..Gaiam, i believe sells them, it was some yoga catalogue. Was a curved lounger but opposite of normal...plus you could get your head lower. I think for someone with constant back tightening or locking up this might give some relief..but again check with doctor. Let us know about your fusion...how it goes if it helps..if you do not mind. Down the road..i been already told that might be my only option...though they can do vertebrae replacements! Did you look into this too? if you do not mind sharing with me i would appreciate it.
reet said:

Hi Louise! I too have problems and will be having fusion from L3 to L5. I don't know how far advanced your problems are but my SIL has problems and she is seeing a chiro who has a PT program at his office and they are stretching her gently to give the vertebrae the space they need again. I don't know what it is called but I can ask and maybe you too are to advanced with your problems to try this. If you want me to ask her, I will be glad to do that. I know this chiro is unique in this also. Hugs, Reet

7

Reet, when is your surgery booked for? Please be sure and ask if they are using donor bone, hardware, or any insertion devices. I have donor bone and hardware. The surgeon's PA can be a wealth of info, so don't be slow to write down and ask any questions before hand. The bone fusions take up to a year to fully heal. I wish you the best through this!

It was down to have the surgery and risk full body paralysis, or become a quadriplegic without it, so I risked it and am glad. My age helped, because they normally don't see issues as serious as mine until someone is at least 80 or older. Only 1 night in the hospital!

A good ethical chiro won't go near a fusion person, at least not here. and since my spinal issues are 4 fold? Not before the fusion either. I'm blessed with a great doctor physical therapist who has helped me since my early 30's off and on. I may need to go see what his take is on all of this. If I tell my primary to send me, he will. It's getting there that is tough, the tremors and other stuff make driving unsafe when they hit. I'm too young for the senior van services to come get me!

hugs, Louise

reet said:

Hi Louise! I too have problems and will be having fusion from L3 to L5. I don't know how far advanced your problems are but my SIL has problems and she is seeing a chiro who has a PT program at his office and they are stretching her gently to give the vertebrae the space they need again. I don't know what it is called but I can ask and maybe you too are to advanced with your problems to try this. If you want me to ask her, I will be glad to do that. I know this chiro is unique in this also. Hugs, Reet

8

Can you take anti inflamatories like advil or ibuprrofen? They help with the inflammation but I know how it feels my left SI joint gives me fits sometimes and I just want to crawl in a hole and be left alone. Injections sometimes work but not always. Another thing that could give some relief would be a heat pack to loosen things up a bit if you haven't tried that already. Sorry those are the only things I can think of but I'm with you sister, it's no fun when they act up. Thoughts are with you and hugs, know you are hurting.

Snowolf

9

I'm having my second bout of sacroiliitis this year. Went to a chiropractor, he advised those flat gel ice packs for a few days to lessen the swelling, then he would adjust me and it was better for a few days, then had to repeat, but I needed Tylenol 3, I couldn't even roll over without muffling my screams.After the third adjustment it went away. If you have permanent pain there, its called ankylosing spondylitis. Facet joint ablations may help. There are chiropractors out there who do not twist and pop your back, but use a little clicky thing connected to a computer that just gently presses on your spine and moves a vertebrae one way or the other. I'm going to that king next time. You can look up anything I've mentioned on Google, and I have a video of the chiropractors new gadget if you're interested. When I looked up sacroiliitis, I read that being constipated makes it worse. The material in your bowel rubs on that joint sometimes and inflames it. So I take magnesium citrate almost daily to keep things moving.I also use a rollator walker so I can sit every few steps.I'm scared silly of back surgery, seen too many with failed back surgery syndrome, and the statistics for back surgery are really depressing. So I might try acupuncture if I can afford it, Or cortisone injection.So sorry you have it too!

10

Visit www.spine.com they have stretches that help loosen up your hips that will help greatly. Take it easy and slow at first. Good Luck!

11

I am always willing to share with anyone what is happening. My SIL did not have any adjustments yet. He is very holistic it sounds like and feels that the PT is what she need now which is 3 times a week for 2 hours each time. She is very good about doing her exercises and in fact the chiro advised her about not doing a lot of the thing she has been doing at her gym. He told her he wants her to stay well and she will if she does maintenance after she is done with what he has her doing. He has been doing this for 31 years and is considered the best here where I live. I was amazed at all this.

I have another MRI tomorrow morning and I will wait for the film and take it directly to the surgeon. After he sees the new one and the old ones again surgery will be scheduled. He wants to make very sure that there isn't more change the what he has seen between the MRI last year and what he saw on xrays last week. He apologized about having me do another MRI but wants to be very sure before he cuts, he said. I will have rods and screws at the spine itself. Then he will either used a bit of my pelvic bone or cadaver bone and use those on the outside of the spine next to the rods and put those into the fat and muscle for more stability. Then they will use a needle to extract some red blood cells then shoot that into the area where the bones go to help with healing and natural fusing. I was told that I would be in the hospital 2 to 3 nights and PT would have the final say as to when I can leave. I have to be able to do certain things before I am released. I had the surgeons surgery nurse walk me through every step of pre op, operation itself, and post op. I saw my pain management doctor yesterday and he was very assuring that I would not go through what I did after the knee replacement. Any trouble at all I will call him directly so the lupus and fibro will be managed as best is possible. He has changed my pain medication now to better handle the pain now and talked about after I am healed and that we will have a plan to start weaning me off of the medicine. I really, really have a lot of confidence with everyone involved. The PM doc also assured me that there is no reason to suffer before, during or after the surgery or the weaning. He said " Don't worry, we will be talking and you will do great!" I did not look into vertebrae replacement as I didn't know that can be done. There is a doctor in town that did a disc replacement and he is one of only a few orthopedic docs that have done that in the US. I could have gone to him but I didn't know he name until after my appointment with my surgeon that the other one was the man that did the disc replacement. I feel okay with my decision even though I am scared about it. I think that is because I am realistic that I am going to hurt before I get better. After the surgery nurse talked with me for almost 2 hours total, I feel informed.

siskiyousis said:


Reet,

I have same thing in my hips but AS throughout my spine. He should make sure seeing chiro is okay with his doctor. I was told not to ever use one with my disease. Also stretching the spine is a type of traction...they did to me years ago when i ruptured a disc. It was not done gently ...gently i can see how stretching our backs where they use to be would be beneficial! I do believe that chiropractors are generally great for helping back problems. I found out that it could be harmful by saying i had appt with chiropractic doctor. There are devices you can buy that does this..Gaiam, i believe sells them, it was some yoga catalogue. Was a curved lounger but opposite of normal...plus you could get your head lower. I think for someone with constant back tightening or locking up this might give some relief..but again check with doctor. Let us know about your fusion...how it goes if it helps..if you do not mind. Down the road..i been already told that might be my only option...though they can do vertebrae replacements! Did you look into this too? if you do not mind sharing with me i would appreciate it.
reet said:

Hi Louise! I too have problems and will be having fusion from L3 to L5. I don't know how far advanced your problems are but my SIL has problems and she is seeing a chiro who has a PT program at his office and they are stretching her gently to give the vertebrae the space they need again. I don't know what it is called but I can ask and maybe you too are to advanced with your problems to try this. If you want me to ask her, I will be glad to do that. I know this chiro is unique in this also. Hugs, Reet

12

Louise, I answered most of your questions in my last post. I won't know for a couple of days the surgery date. If it is too close to when we go to our sons for Christmas then I will postpone it until after the new year. I will not miss the family Christmas in CO this year. Also, my older sister has had 3 back surgeries and this will be my 3rd. She waited way to long for the last surgery and now has a pain stimulator in her back and is still always in a great deal of pain. I have learned a lot from her and what NOT to do. We are very close but her life has more complications then mine. My husband is very helpful and understanding and knows that I research everything and try to come up with as much knowledge as I can. I then talk it over with him and sometimes ask him to go with me to doctors appointments. Her husband thinks he knows more then God, he choses who she should see based on his experience or lack of. This has done her a lot of harm. He has also told her how she should handle her pain based on his experience which isn't much.

After her fusion he and their sons decided she was addicted to the pain meds and took them away from her cold turkey. You can imagine what that did to her. Now, she isn't allowed to have them but wears a patch. Yesterday she told me that she couldn't have an injection in her bad shoulder for 6 months and she was only at 3 months. I asked her why 6 months and she said that she thought it was 3 but her husband said she was wrong and it was 6 months. I told her if she didn't call our pain doc today then I was going to do it. Can you all tell how angry I get with this? And she was a nurse!!!

I will stop venting now. LOL I will let you know when surgery is and keep you posted after too. Meanwhile, there are many of you here that are much, much worse then I am and you inspire me. I pray for everyone daily and send many gentle hugs over the airwaves. Blessings, Reet

ohsoperplexed said:

Reet, when is your surgery booked for? Please be sure and ask if they are using donor bone, hardware, or any insertion devices. I have donor bone and hardware. The surgeon's PA can be a wealth of info, so don't be slow to write down and ask any questions before hand. The bone fusions take up to a year to fully heal. I wish you the best through this!

It was down to have the surgery and risk full body paralysis, or become a quadriplegic without it, so I risked it and am glad. My age helped, because they normally don't see issues as serious as mine until someone is at least 80 or older. Only 1 night in the hospital!

A good ethical chiro won't go near a fusion person, at least not here. and since my spinal issues are 4 fold? Not before the fusion either. I'm blessed with a great doctor physical therapist who has helped me since my early 30's off and on. I may need to go see what his take is on all of this. If I tell my primary to send me, he will. It's getting there that is tough, the tremors and other stuff make driving unsafe when they hit. I'm too young for the senior van services to come get me!

hugs, Louise

reet said:

Hi Louise! I too have problems and will be having fusion from L3 to L5. I don't know how far advanced your problems are but my SIL has problems and she is seeing a chiro who has a PT program at his office and they are stretching her gently to give the vertebrae the space they need again. I don't know what it is called but I can ask and maybe you too are to advanced with your problems to try this. If you want me to ask her, I will be glad to do that. I know this chiro is unique in this also. Hugs, Reet

13

Hi Ann, good input on this. I have had the ablation and it no longer works. I have had 2 laminectomies and I have always had neurosurgeons until this time. Back issues are such a huge problem for us. I think no one can get enough info on this problem. This is a good thread for so many of us. Rita

14

Exactly right, Ann. And those of you that are women, remember you are not built like our beloved men. I worked all my life just like my brother and Dad as did my two sisters. All three sisters have had several back surgeries. My brother none.

15

Oh Ann, that is so true! I am in so much pain as I write this! Surgery looks good to me at this moment!

16

I have just started having problems with my hips over the last year........so I have no helpful information..........but I will offer gentle hugs and prayers for you..........hang in there :)

17

Thank you to everyone here for being supportive and helpful as possible.

I'm so glad Ann A mentioned the results of meds used long term, and how to help counteract that.

Reet's point of women and men not being built the same is quite valid. Men have generally more muscle mass, so more support for their bone structures.

My use of medications has been very limited, so this is a "me" thing ongoing. I do have one of my brothers with a different AI diagnosis, and he has all the same connective tissue and joint issues that I do. He was diagnosed age 28, but his gastro doc thinks it was active in his early teens. In my case, I recognize symptoms from about age 22. Already had arthritis in multiple areas.

My uncle mentioned some research he has heard of linking arthritis to actual bacterial infection that targets joints and surrounding tissues, but I have not been able to find any reports from an ongoing clinical trial being done in Europe. Being multilingual would probably help! Adding a good translator to my wish list.

For whatever reason, the damage is done. Until the last 6 years I was always really active, except when ill. At this point, it's about making the best of the hand I've been dealt, and not giving up on myself. I also try to help those around me to realize how important a good nutrition and lifestyle are over the course of time.

I'll keep investigating what may be available and helpful, not already known and posted. My physical therapist doc would be great to talk to, for directions to look towards for info. I can pick his brain while he teaches how to stay as functional as possible. I'll be sure to share anything I can.

to all who are dealing with spine and joints in pain, thank you for reaching a hand out to me. You all are so caring, compassionate, and wonderful!

hugs, Louise

18

siskiyousis thank you for such a long and detailed reply.You are very positive in your thinking. I have always been active until 6 years ago. And oh, you said the N word - NATURE! I love the outdoors. Now I get my nature fix out in the yard for the most part, when able to move that well! Way too young to be in this shape.

I'm going to get a referral to see my very well trained and skilled physical therapist, who got me moving again best as possible after my spinal fusion, among other things different times. He will need to understand being flexible about appointments when I'm unable to drive, other issues here to deal with. I have yet to master doing anything when the movement disorder kicks in other than cracking jokes to pass the time.

warm hugs, Louise.

siskiyousis said:

Hi Ohso!,

One thing my rheumatologist said to me that if i did not want to end up like most of the patients in his waiting room the one thing i could do was to keep moving. He was right especially now as I am aging.

I am sure that your doctors have discussed all the pills you can use to help slow down the inflammation process. NSAIDS, biologics, the cort shots like you mention...i get if you use too much they destroy your joints. Same as taking the steroid pills will destroy your body. One thing i have not looked into is hip replacement...but i know for other replacements they want you to wait as long as possible. Also have you tried the voltaren gel or emu oil? Both help my hips plus TEN's unit has lately been great relief with a electric throw over me to warm my hips. I am surprised how much it helps!

I think if you have not worked with PT in year or more than it would greatly help you to start with one. Basically they need to work with you to strengthen the muscles around any painful joints plus core area.

I would think that a warm pool might be the best place to start. Water helps support you, easy on your joints plus give your muscles a workout. From there he can move you slowly to more intense workout.

This will not be easy so i hope you can find something that you would like to do that involves moving..something you love to do! For me it is being out in nature! It heals me and soothes my soul! For you well, could be from walking, biking to ballroom dancing! Just being able to walk downtown and people watch or gaze at other's gardens! Take photos of beautiful places and people! Get a dog and walk it daily because all dogs should get a walk...they do not like being housebound anymore than we do. Just something you feel great joy from doing it!

I also use hiking poles...and have since my thirties as well as snow poles in winter! They work your arms out while walking/hiking or snowshoeing, skiing....and do not feel so self concious about them. i do have canes if i need them...i just keep them in the car. I try my best not too but learned hard way about not using them when i really needed them, you fall down!! lol!

I am truly sorry about how much it hurts BUT I also believe that with right PT person and you really having the desire you can walk again without use of canes on most days. I even believe if you like to hike or ballroom dance you will be able too!

I say measure an area before you start how long and pain average. In 3 months do it again and i bet you will be so improved, same in 6 months and you will be amazed and in year you will wonder why waited so long to get back in shape that now the world is yours again!! You may not be able to move like all around you or run a marathon but you will be greatly improved!! I bet the canes will get dust on them!!

You take care and sincerely hope that you find what you love to do as to movement!! Me...i am thinking about getting a trail pony...i love high Sierra's and like you walking is getting harder...but at least with trail pony..i can walk/hike in and ride out! Besides I love horses as much as love dogs...always wanted another..midget mule be perfect! Carry some paints as well as a camera and perfect day in my life! Maybe a book by the stream for bit too or in flowered meadow!

19

Well my doctor says rally only surgery is the only thing to do at that stag but of course am not the one for that ! I do understand how you feel, my hips lock u ALS, but I just think that there was a Imelda when I did to know Lupus…Beverly ?

and Keep it Moing!!

20

I have two tens unit. I put one on the right side, one on the left before bed. The pain is relieved enough to usually let me fall asleep. I used to be a massage therapist and got regular bodywork monthly. But I have had to take a break from it to get myself well. Physical therapy helps, but only if you find a good PT! A bad one can make you SI problems worse. I use tennis balls on my gluts, just lie on them and the pressure helps calm the nerves.

hope you find relief!