Hello I’m new I’m 47 female who had sacral iliac joint problems for years, since car accident July last year got a lot worst. seen chiro since Aug 2019 due to a bad flare up not improving got worst now unable to standstill to wash up without my back going into spasm I’m taking paracetamol , pregabalin and codeine and when it’s really bad some morphine to help at night
Just started a pain management course on nhs - but in alot of pain and have a very low pain threshold - icepack help abit 15 mins every hour
Has anyone else experience s I joint problems?
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Purplecat45
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Yes I have chronic sij pain and now scoliosis too.
You don't say the cause of your original pain...posture plays a huge part. In my own case I lost my sight 35 yrs ago and bad posture started the pain.
Assorted GPs over many years have sent me to physio but in spite of keeping up with exercise no improvement. Still blind with wrong posture.
I now see an osteopath...early days and not sure she can help but wonderful for an hour!
Glad you have been referred to pain clinic. It is all about learning how to manage your pain. Could you use a stool to sit while you wash up? Or persuade someone else to do it? Pacing is very important. Learning to stop doing something before pain kicks in. Learning what triggers the pain and avoiding wherever possible.
I only take paracetamol now...Tramadol never worked and I avoided the other meds. Just takes the edge off the pain.
At the age of 16 I was diagnosed with kyphosis of the spine I use to be in a lot of pain for wearing a rucksack to school with all the school books in, my posture was not great and I had rounded shoulders
Most of my work life Imy Jones was a desk job And this played havoc to etc to my back and neck
my back okay and only played up if lifting heavy items etc
my job involved helping in dispensary reception at the doctors which meant I had to do a lot of bending and lifting of boxes which had prescriptions in and twisting which really aggravated my back this was probably about 2002 and I was diagnosed with ligamentous and muscle pain and was told there was nothing I could do or take to help it I was advised to use a tens machine which was a godsend and it really did help me and I ended up seeing a physio sometime later who told me I had sacroiliac joint problems and told me to get a sacred belt to support it
I have managed the pain on and off over those times and had regular chiropractor sessions because I’ve been in agony with my sacroiliac joint pain and they’ve had to tweak it and this is used to be once s year and I would normally have about 4 to 6 sessions and then I will be all fine to get on with my life managing to walk and do housework and the only problem is I had really was my chronic fatigue due to the fact I lost my thyroid back in 2013 as I had papillary thyroid cancer
On 13 May 2018 I fell off a raised garden bed and fell backwards landing on concrete paving slabs I didn’t pass out but I remember rolling onto my left side and touching my head where I had a graze and it was bleeding - I saw a chiropractor who tweet me about and it was all okay
then I had a car accident July 5 2018 ( someone drove into me 😱) and I had whiplash injuries and dashboard knee injuries and I had a lot of problems with my neck my top of my back , middle of my back and lower of my back I was diagnosed then with lordosis of the spine as well as obviously kyphosis which i had from 16.
I had loads of sessions really to try and get me sorted because I had so much going on with back pain This sacred iliac pain was all part of it but I continued with the chiropractor sessions and I was given during by my doctors at that time codeine and ibuprofens andParacetamol and gabapetine but this still didn’t help with the pain because
I had had gallbladder pain from April last year and my gallbladder was removed in August 2018 so I started using the morphine to help with my lower back pain and this did give me some relief and help me sleep at night
because of the chronic fatigue this meant I do sleep a lot in the afternoon which means I’m not very mobile and I do wake up quite stiff and have been told this doesn’t help my sacroiliac pain
but since that time my sacral iliac keeps flaring up and gets worse every time I had the pains in the buttocks the lower back and the pain is going down the back of the legs I also was being investigated Caudia equine November last year they thought it was a trap nerve because I hadn’t wee for 3 days so I had a catheter Inserted by a and e they did a MRI and I was told it was wear and tear and that there was some swelling around one of the vertebrae’s and that it would settle because the pain was so bad I had to go back to the morphine quite abit day and night
used Biofreeze gel roll-on to help with pain and ice packs
Heat makes my back pain worse and the chiro said to not use heat
Tens no good as too tender to use on that area
and since seeing the chiropractor since August this year it hasn’t improved it’s got worse and I am now finding that when I stand fit more than 5 mins I am in agony especially for example yesterday I was in the queue to have the flu jab and my back went into spasm and it was so painful and I’ve got a very very low pain threshold so I’m really at my wits end I have got a shower stool to use and I have got a stool to use in the kitchen when needing to use the job and when preparing veg I sit at our dining table and chairs but it means for example if I need to stand anywhere in the queue or put washing out it causes me back to go into back spasm
I have just recently got a secondhand electric recliner chair and that does give me a little bit of help but I don’t really know where to go now
I’m going to contact my doctor tomorrow to see what she says I don’t know whether she will refer me to see a specialist or whether she send me to a NHS physio as I’m on benefits I can’t afford to keep paying for Chiropractor’s so I am not going back for my next appointment to chiro
I have read stuff online and seen that you can’t always get a diagnosis for s I joint pain and they were showing online about dyes and anthestic stuff going into the joint to prove if it is the sacroiliac joint that is actually causing your pain and not anything else
I’ve also seen on their online that people have the joint fused so I really don’t know what what the future is to do with my back but it’s really debilitating and I’m at my wits end with it I
I’ve got depression anyway but it’s getting really low and my partner does not know what to do with me when I’m in such a state with the pain sorry I have done a massive essay
Oh I was forgot to say earlier I was checked again in April for caudia equine as a physio who was helping with my knees was concerned as my back pain got worst and I was accidentally wetting myself only in the mornings but again they couldn’t find anything causing it
After chiro Wednesday (5 days ago) the following day I had a bout of diarrhoea and I had trouble urinating it was stop and start but now it’s ok - I have read s I joint pain can affect you down below there
Oh and i fine my sacral iliac pain is really bad before and during my period
I have degenerative kyphoscoliosis in the lumber region with left leg pain. The pain in the leg makes it too painful for me to walk very far. Along side my back problems I have a pacemaker which means I can't have MRI or a TENs machine. The nuro-surgons decided I would be too risky to operate on. I have had 5 injuctions in my back in different places in my spine . This was supposed to diagnose wherethe pain was coming from. After the last one there was less pain if I was sitting level but great pain if one buttock was even slightly higher than the other. I also have bowel and bladder issues.
My back has mainly deteriorated in the last 15 years. I am now 68 and the neuro surgon though it was probably a developement from the uneven hips that I had as a teenager.
from the age of 5 until I was 17 I went to ballet classes and developed a good posture which was further encouraged by learning yoga in my early twenties. However 3 children, a job behind a computer, and going through the menapause has contributed to my current state.
My GPs have gone through the range of painkillers. I now take pregabalin because it helps the peripheral neuropathy in my feet, it does nothing for my back. I have tried opioids but tramadol did not help the pain and it was terible when I stopped taking it, Cocodamol gave me hot sweats in the night. I do take paracetamol but it only helps with the other pains in my body, not my back and leg pain.
I too have had physio and chiropractic treatment but they are of no use to me. I take 2 Iyengar Yoga classes a week which keep me flexible and help me to keep my posture. I have found that health care professionals do not think there is any thing wrong with me until i show them where my spine is.
I manage my pain by pacing my self and providing as much support to my back as I can. My yoga teacher suggested using a belt round my hips to support them (including the SI joints) . She means a yoga belt which is canvas and has D rings or a sliding fastening and has to be as tight as possible. I find this useful when I walk as it lengthens the time I can bare to walk. I stop frequently for sort sit downs when ever as suitable seat is available if there are none I sit on a wall, stairs or even a kerb.
I have modified my environment - a memory foam matress witha memory foam topper means the curve of my back will eventually relax and I can go to sleep. A cheap Ikea fleece throw has been cut into pieces in the car so it can be used to support different areas of my back, I do have a recliner chair with a seperate stool and I do use that but my greatest relief during the day is given by laying face down on the floor with a cushion/pillow underneath my pelvis and a book to read. Of course when I get up the pain comes back.
In general I do active things during the morning and more sedentary activities during the afternoon. This means I shower in the mornings even with a stool. I used to spend upto 2 hours cooking dinner but as I am now only doing it for me (and depresion is causing me not to feel hungry) I spend less time but I do sit to do vegetables and would like some other adaptions to the kitchen. I never wash up after, I always leave it until the morning.
I do very little housework apart from washing and rely on others to do it for me. You have to get your partner involved in the care of the home. Unfortunatly that option is nolonger availabe to me as my husband has found another woman and is divorcing me.
On the upside I experience less pain now I can do things at my own pace. I make life easy for myself, watch daytime TV with out fear of being told I am wasting my time. I spend time reading rubbish because it relaxes me. I dont tidy up as much as I should so things are always handy.
I would recomend you to find some exercise you can do . Swimming is good but not for every one. i was lucky to attend a pysio class for backs at a teaching hospital and that was designed to get people to the point where they could join a normal gym and keep going. I found particular exercises of help and at times repeat them. I have a giant exercise ball to play on at home.
I prefer my Iyengar Yoga which works on the principals of allignment from the feet up. I have tried other types of yoga over the years but this is the one to do as you age. The teachers have to learn in multiple stages with years to get their own practice perfect before going on to the next stage. They learn how to help less than perfect students using a variety of props . It requires discipline and attention to detail which they pass on to their students.
Get to know your body. Listen to it. Use the internet to research your condition. Knowledge is powerful.
Thank you Hilary I am going to go to a aqua class as advised by my chiropractor but I won’t be going back for any more chiro sessions
Yes I have. Sacral iliac joint Belt which I dusted off and tried to use it on Sunday - prior to that I tried using my partner back support - but again advice from my chiro was not to wear any longer than 30 mins because then your not using muscles and that’s no good
Wow what a journey you been through thankyou for sharing
My wife is 38 she suffers with exactly the same things you both have said. (Except her sight) she told me her eyes were failing but I didn’t understand what that meant.
She has a very “fatalistic” (sorry, for lack of a better term) the sky is never falling until it’s already fell on her head and she needs me to help dig her out of any mess she’s gotten herself into which I’ll gladly do but she doesn’t allow me to ACTUALLY she’s infuriatingly stubborn but I love her despite of all of this.
I’m new here and I’m just learning my way. With her and as her Husband I knew I couldn’t truly care for her unless I took the time to educate myself.
All I’m saying is, I might be her hairy lug (lol) but we are all here for a reason and I hope you find yours.
Yes ma’am she’s handling all of the medical condition arrangements.
She has put her family (me included) ahead of her own needs. I’ve known her since we were kids and she’s helped me battle my own demons and she has put hers on the back burner for her entire life. Now she’s very sick and she’s the “medical professional” knows all these scary terms that I don’t have a clue what they mean but they scare me entirely.
When she’s scared, especially medically, I might as well be drowning in a thimble full of water. That lose of control when I’m im 2,000 miles at least away from her physically totally terrifies me.
But I’m trying to smile through the pain because her strength astounds me but her being terrified and far away makes me want to react hastily but she assures me she is safe and well enough. And someone has to work and she may be more financially capable I will never let her go back to work even if that sounds horrible. I’m not going to let her work and risk being in a wheelchair sooner than is meant to be
I didn’t realise how hard it was for my partner it got to the point he didn’t want to know when I was in pain because it was so much due to my very low pain threshold
I felt unloved because he didn’t want to know but he explain he can’t bear to see me in pain as he feels so helpless as he can’t do anything to make the pain go away
That sounds good I saw a you tube clip where they injection dye with the anthestic to check if it was the sacral iliac joint pain giving the patient pain and I think it also included a steroid
It was the only way to diagnose this condition as I understand it doesn’t show up on scan xrays etc
UPDATE saw a nurse practitioner on Monday she up my pregablin to two at breakfast and two at teatime (rather than one 3 times aday) she given me more morphine so that for nighttime and early hours but if really needed I can use the lunchtime slot
She referred me to the oasis clinic to see what they say
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