I have had a form of tendonitis in my wrists with my lupus and also bursitis in my hip - both of which I understand are caused by inflammation in the body and can be linked to lupus?
I have had increasing problems with my back, mainly a stiffness when standing for too long. Washing up, cooking, ironing, watching my son play rugby in the cold winter - which I have given up doing, (my husband goes with him instead). I also had a period of muscles spasms in my back at the time of a lupus flare, but wasn't sure what the cause was as it was the first time I had experienced it. (September/October 2015).
Of course this means that if I've had a busy day with the children and cooking etc, my back seizes up by the evening and sometimes I can't finish tidying the kitchen etc and I have to sit down and my husband takes over.
So when I told my Rheumy about this, (in early 2016), increasing problem last year, she sent me for an MRI of my back, which found a syrinx cyst and that matter has kind of taken over. But we hopefully think it is a co-incidental finding and not growing - a 2nd MRI will be done soon just to confirm before I get "signed off".
Anyway, during the 2 appointments with Neuros re the syrinx cysts, I have told them about my back issues and the tenderness I have on my sides and thigh area - which I thought was a result of my OA in my hips - already had a hip op left side to extend the life of my own hip and know that I will need both hips replaced in due course. But it seems I had a positive bilateral Faber's test - which apparently indicates inflammation of the sacroiliac joint. This had never been suggested to me before. I cannot be linked to my 3 pregnancies.
Apparently there is an MRI that can be performed to see if there is inflammation / arthritis there? I do have a follow MRI booked re the syrinx but not sure if they will scan for the sacroiliac joint inflammation too.
So, does anyone else have this inflammation and it has been linked to their lupus?
I am getting frustrated with being told that my OA in my hips, knees and back and my aches and pains are as a result of being 42. I have friends with the odd twinge etc and one just had a knee athroscopy but generally all my friends work full or part time, are mums, run a home and exercise up to 5 times a week. I can barely function some days and have just started back at 1 pilates class a week, after 3 months off and that makes me ache for days. I don't think this is just my age. I know I have lupus but they do not suffer with the aches and pains I have.
I'd love to hear form anyone with inflammation of the sacroiliac joint with ideas for pain relief and like I said, has it been linked to your lupus?
Thank you.
Suffering spasms in my back again for a week now and having trouble sleeping. But at the mo I would say lupus is under control better than it's ever been. So confused.
Wendy
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Interestingly I have read this can be a result of hypermobility - which I have and is described as background hypermobility. It was said it wont have helped my OA in my hips, as my range of movement is too great and will damage joint. I can put my hands flat on the floor, when standing with my legs straight. I always thought this was normal. So might be linked to this too.
Hi wendy , im sorry you are going through this . Ive sjogrens, which was diagnosed last year however for years prior to the actual diagnosis being made i had back problems. I had severe back spasms which caused my ribs to dislocate on 3 occasions, I then had bursitis in my hip and my sacroiliac joint locked . The physio and acupuncture helped the back spasms and the steroid injections in sacroiliac joint worked well but ive had to have 5-6 in bursitis which is still a problem . I don't know how much this was all related to the sjogrens but it does increase the risk of inflammation. I really hope you are able to get suitable treatment to help with the pain šø
Thank you for your very helpful reply. I think this must all be linked, I have bowel issues too, so inflammation in hip, back and inside that middle area. Can't be coincidence, can it?
I spent some time in hospital a few years ago which all started with a flare of sacroiliac pain that was so severe I couldn't move. They took one look at me in triage and put me on a trolley - no being sent back to the waiting room to a chair! Their initial intention of infusions of high dose corticosteroid plus pain killers in the morning and valium (a muscle relaxant) in the evening worked a minor miracle on the first day (speed was the idea) - until the second valium infusion which induced atrial fibrillation which they had great difficult managing. They thought it was the steroid - until it happened the next night. Abort treatment...
So I was sent to the pain clinic for the slow and more gentle approach - where the anaesthetist diagnosed myofascial pain syndrome that makes my entire back musculature eventually go into spasm. On reflection - that has been there to some extent for many years, I've managed it with Pilates and Bowen therapy and the odd visit to an osteopath (because it pulls on the spine and upsets its balance and the osteopath did something that worked). About 13 years ago I got the first signs of polymyalgia rheumatica (PMR) - and that really didn't help the general back problem and probably eventually resulted in the total meltdown because I moved and had to give up the Pilates etc that had kept me upright - unaffordable for me here in northern Italy. As an extra - I had a squint wisdom tooth that affected my bite and it kept erupting and making it worse. Removing it has made a massive difference.
I know that Barnclown also has back issues which have been helped by something called intramuscular stimulation (a form of local acupuncture I suppose you might describe it), Mine was helped in the pain clinic by a technique called needling. They aren't quite the same but I think are probably aimed at the same result, stimulating the nerves to get the muscles to relax. It is also possible to get therapists to do something called manual myofascial release - they "attack" the hard knots of muscle fibres that form in MPS and are composed of concentrations of inflammatory cytokines. It so happens - the same cytokines that cause the systemic problem in PMR. Release of the trigger points in MPS (they form in pairs on either side of the spine in shoulder muscles, about rib level and in the lower back, about where the baby's dimples are) does lead to a flare in my systemic symptoms but it is short-lived. Originally when I lived in Germany I saw a massage therapist twice a week for months - and he was working on what I now know are these trigger points - physio courtesy of the German medical system. When I sought similar help through the NHS in the UK I was looked as if I was crackers! However, a good sports massage therapist or sports physiotherapist would probably provide the needful. Bowen therapy helped me (and others with similar problems) - but you do need a good one. The ultimate is steroid injections into the trigger points - I get them here, can't imagine who one might persuade to do it in the UK!
A long lot of writing to suggest finding someone who would at least try one or other of those options.
I don't have lupus - but at the age of nearly 65 I can still almost put my hands flat on the floor like you. Shouldn't we able to? I thought it was normal too! The useless musculoskeletal specialist (aka a physio with an extra bit of paper) I saw early in my journey with unrecognised PMR told me there couldn't be anything wrong with my back as I could touch my toes, he couldn't. Pratt...
You have made me chuckle. Apparently if you can put your hands flat on the floor it shows you have too far a range in your hip socket. I don't have any friends or family that can do it - including the kids. So because my hip rotates further than it should in its socket there is further wear and tear than there should be, hence early hip OA issues. I just Googled Inflammed Sacroiliac Joint and The Spire website came up. Mentions hypermobilty in the transcription of the video. Thanks for all the other info. Wendy
Oh right. My hip pain was said to be OA too - but it was actually trochanteric bursitis. All the so-called OA signs disappeared once PMR was diagnosed and I was put on a moderate dose of pred. Thankfully - PMR is a pain but the non-OA was even worse.
I forgot to say - I was told by an orthopod that my low back pain was wear and tear and I'd have to live with it. The pain specialist and the physio were horrified - they just prodded my back and identified all the hard places. Once deal with that awful low back pain has never returned - if I have problems it is upper back which is where it all starts and if it is left to its own devices it just spreads.
I also thought it was normal to bend that far - apparently its to do with hinging from the hips not the back joint. My physio was fascinated by it as apparently I can touch my toes but my back stays totally flat and doesn't bend or move at all. She tried to show me her doing it the same and she can hardly get to her knees. If I try and bend forward making my spine bend so keeping my butt pushed back against the wall to stop my hips rotating wrong I can barely make the top of my thighs lol
In my pilates class there is no one who can touch the floor despite the rest of them being fit and going to exercise classes and pilates 1 or 2 a week for years. They are lucky if the tips of their fingers skim the floor. I think there is something in this hypermobility link and the sacroiliac joint and hips issues. At least there seems to be.
I found this quite interesting. I have all manner of tendonitis/bursitis in different joints all over for years which I'm now told is probably the lupus attacking my soft tissue. I have OA in my lower spine with L4, L5 and S1 involved and I often have lower back muscle spasms and can't stand for long unaided. I was told in my 20s it was caused by swollen facet joints and had two epidural steroid injections done before I declined the third as those two made me worse not better. The last 18 months or so I've also developed bursitis in my hips and my rheumy did a steroid injection directly into both last summer - it helped for a few weeks but then straight back to how they were before. I have an appointment with my gp in 2 weeks as well as nobody has actually looked at my hips to check it is bursitis causing the problems and not something else. I've also been told my hips over rotate, I have signs of hypermobilia in my spine which over arches and I hinge wrong - I could always put my hands, and at one point forearms, on the floor straight legged but as I've got older and stiffer I can't do this as easily now but still further than I should be able to, and my ankles roll in one way while my knees roll out the other and lock back too far (high arches with over pronation which is fun to fit running shoes apparently). I've also been told I am hyper reflexive - no idea what that is. I've just put everything down to the lupus but no idea
Just to make sure you see my addition - investigating aid for muscles might help the pain even when it isn't the whole story. As I keep saying on my home forum - every little helps!
I was just reading that with interest ... I get problems at the top of my shoulders which feels like it radiates from my neck, my ribs will often hurt and my lower back is very much by the dimples but hits my sciatic nerve going down my right side. I was originally referred on back problems because my right knee kept giving way (bursitis there too) and I kept falling over which at 22 was a bit odd! The physio picked up it was coming from my back but although there was facet joint swelling they couldn't understand why it was causing so many problems. I gave up asking over the last 23 years and now I get given diazepam (i.e. Valium) when it spasms and I use a tens machine. Acupuncture works well too but the physio locally now won't touch my back as she says if she tries to fix the bottom part the rest of my back is just waiting to join in and she thinks she'll make me worse not better. The physio I paid to see privately at the local specialist rheumatoid hospital wasn't so easily put off and works really hard on my back - she tells me I have hyper sensitive tendons so bizarrely she has to work more like a sports massage to get the nerve endings/tendons to ease off and get past that. Flipping painful when she starts but once she gets past that it does work. Acupuncture has always helped when the muscles spasm too.
Hips the rheumy has decided is trochanteric bursitis but I'm going to get my gp to check it actually is just that and no OA changes. Makes sleeping fun though - I wake up in pain from lying on my side but if I sleep on my back it literally locks totally and to straighten up I have to force myself into a standing position that feels like something is ripping me apart inside. So I'm constantly waking up all night to change positions which doesn't help the fatigue!
Pilates does help too but similar to you with the touching the floor thing - I have what's called a boogie board from my gym days which is like a skateboard without the wheels but a roller underneath so you move the board back and forth to build your core stability and strengthen certain muscles. I have no trouble balancing on this thing moving it back and forth. the very fit and healthy physio who teaches Pilates wanted to try it and I was stunned that she couldn't stand up and balance on it! Apparently it's because my hips travel so far I find it really easy and that's not normal. Who knew
If I just read your post out of context - I'd say our backs probably have a lot in common!
I do wonder if the sacroiliacitis and hip bursitis are made worse by the back muscles pulling at everything and making the spaces tighter than they should be. But they are all so much better now than they were. Five years ago I couldn't walk for more than 10 minutes without excruciating low back pain that made me feel physically sick. It is there but really hardly noticeable in comparison.
Can totally relate to the sleeping thing! Always slept on my left hip - which is my worst hip, so I change positions a lot. Sleep on back, then wake up stiff and in pain - have had to wake my husband on occasion to turn me over, as I am literally stuck. This does disturb much needed sleep!!!!!!!
I do pilates and have done since Rheumy recommended it in March 2014. But just back to it after 3 months off, what with coughs and colds and aches and pains, nit been up to it at all. I take a pillow and my own thicker mat - they must think I am bonkers!!!!! Put the pillow under my hips when lying on my side. Soooo painful when lying on the ground to exercise.
I went on Friday as after missing 3 months and going the Friday before, I thought I want to keep it up and am always being told by Rheumy must do more, be more active, so despite the backache and spasms I went. Well I missed loads out, as I couldn't do it with bad back and I have been worse since. I wish they understood!
The modified Pilates with the physio have these partly inflated balls that you put under you to make the balance harder and supposedly increase the difficulty - if they have them it might be worth you trying it. Myself and one of the other ladies found it easier at this so called harder set up and interestingly we both had the same problems with our lower backs over extending and being very stiff due to hyper mobile hips! The physio thinks that the ball makes our pelvis tilt to where it should be so the exercises are then being done properly. Be careful as well that you're moving right - because of the hyper mobile joint in my back even the instructor thought I was doing the exercises right until she watched VERY closely because I was finding it easier than I should and I was moving from the wrong point. My body hides it very well.
Unfortunately I've had to give it up as the lights make me flare so I can't go to the class
My wife's PCP diagnosed her with Sacroiliitis over three years ago just based on the pinpoint location of the pain. He prescribed physical therapy, but it didn't seem to help. The condition went away on its own, or it responded to the myriad of medication changes that took place. This was several years after her episode of Transverse Myelitis.
My wife doesn't have any formal diagnosis, but we both think she has Lupus.
Hello and thank you for taking the time to reply. I keep being told to be more active. I am not inactive. I have 3 children - 8, 11 and 12. So they keep me going. I'm up and about to get them to school etc - even if I have a sleep or a day in bed- between 9am and 3pm, I still have them to care for. I try to keep life as normal as possible for them and they are often oblivious to my trials and tribulations, as they should be. But ultimately for me, as much as they say, do more, be more active, it doesn't help. If anything, I find it makes matters worse. I think this back issue started when I felt OK on Tuesday and washed my car. Spent Wednesday in bed - fatigue and headache. Back pain and spasms soon followed. Never washing my own car again! Ha ha.
I have also read about Transverse Myelitis - one of the Woman of the Year last year was a lady with lupus and Transverse Myelitis. I remember reading about it. I was interested as I thought there might be a connection with my syrinx cyst.
You're doing an amazing job under the circumstances. The thing is that inflammation is nature's way of immobilizing an injured joint. So is it a good idea to tell nature, "We're gonna move that joint no matter what?" IDK, it's a mystery to me. I wonder, is there such a thing as steriod injections for that area? Good luck!
Just found that name of the lady with Lupus and Transverse Myelitis - which in the article says is a rare complication of SLE - Woman of the Year Lupus Patient 2016 - Tracy Henrickson-Watson. Might be worth a Google to find out more. Especially if you think she has Lupus. It's all about joining the dots for us.
Wow, thanks for the info. That's amazing! I think my wife is Woman of the Decade, but I might be a tad biased.
Hi Wendy,
If you have inflamation in your back and bowel issues then the rule out has to be Ankylosing Spondylitis ( AS ). It's a systemic disease and can cause problems in other joints as well as the back, plus inflamation in the bowel ( Chrohns ) and uveitis/ iritis.
It's a fairly specialised MRI to detect it, they need to ask for STIR views, it doesn't show up on a normal MRI of the back.
I have AS in a crossover with Behcets syndrome. My back and joint pains ( hips, shoulders and ribs ) are much worse the second part of the night and I have problems standing for any length of time. It can affect the knees and feet as well.
I would check out the symptoms and ask a direct question about it.
Yes, my sacrum joint synovitis is related to lupus. The proof is that, like the rest of my joint synovitis, it is effectively controlled by my daily oral combined therapy lupus meds. And I am so glad...because before I began these meds 6 years ago, I'd had decades of agony despite conscientious lifestyle management inc pilates, the Alexander technique etc etc...these therapies helped me remain functional, although i became increasingly debilitated as autoinflammation progressively caused cumulative multisystem damage
A spinal/head injury @ 7 + my ehlers danlos hypermobility/infant onset lupus combination means I've been living with contradictory progressive tightening of tendons & muscles + hyper loose ligaments + spondylosis (including early onset osteoarthritis)....which made diagnosis very confusing for both the NHS & complimentary practitionersfor decades
Because my lupus diagnosis got lost when I moved to the uk @ 21, I went without daily systemic immunosuppression until I was finally rediagnosed in my late 50s 5 years ago. By that time, I'd spent decades on useless prescription NSAIDs & opiate analgesics + lifestyle managing with the care of complimentary practitioners + emergency NHS care + a series of my hero Pain Consultants bilateral spinal facet joint denervation operations to neck, lumbar & sacral joints with Intramuscular stimulation (IMS) rehab for months after each operation (IMS has been dramatically effective in my case). All this, as I've said, kept me mainly functional, despite the inevitable progressive multisystem debilitation
So, hurrah, I am delighted my lupus/sjogrens treatment plan meds are damping down my synovitis...I started with hydroxy, which helped all the smaller joints...but I needed pred + myco to damp the synovitis in spinal joints (the only synovial synovial joints are the v highest cervical joint & the 2 sacrum joints). I suspect daily low dose amitriptyline is also helping. (My daily cocktail includes: hydroxy + amitrip + low dose pred + moderate dose myco)
BUT my clinicians & alternative practitioners all agree that decades of failure to fully diagnose & treat the complex overlapping systemic immune dysfunction & connective tissue disorders underlying my signs & symptoms created an entrenched Chronic Pain Syndrome...which means I need to continue to lifestyle manage a go go, conscientiously pacing myself, practicing the techniques that have stood me in good stead (Alexander, pilates etc) while also complying with my lupus combined therapy treatment plan. So, even now I'm less of a diagnostic mystery + I'm getting really effective treatment, pain management continues a day to day commitment
I hope something in there is useful
I too think you're doing an amazing job. I have great hope your perseverence will pay off big time v soon. Am so glad you're here
Sorry to read you have inflammation in your sacroiliac joint and painful muscle spasms
All part of lupus or could be OA because they're accepting better that you can have inflammation with OA !. It is possible to have a steroid injection into them but we may be more reluctant to do it here than in US I don't know. A referral to a pain clinic could be very helpful as they do injections. As to the spasms, do you take Amitriptyline?. This is a good muscle relaxant as well as pain reliever so a word with GP would be good if your not on it or if you are maybe a dosage increase would help?. Hope I've helped and the inflammation reduces!. A look at your lupus treatment doses could also help. All the best. X
Hello Misty14. Yes, I have read that increasingly doctors think that OA has inflammation too. That would fit my hip problem. I don't take Amitriptyline. I have read posts form others that take it. Is it used for Fibro too? I am on 3g a day of MMF - or Mycophonlate Mofetil, which is a complete immune suppressant. But it's not as strong as Methotrexate, or that's my understanding. But it had good effects and is well tolerated. That's the max dosage. So that cannot be increased. Been on it since July 2016. So maybe its' effect will continue to increase and my back will improve/????? We'll see. Otherwise a small daily dose of steroids on top of my MMF & hydroxy may be needed. I just have a feeling that I have lots of dots that need connecting - by a lupus expert. Thanks again.
I can't comment on all your MRI results as its too technical !.i do recognise from mine the facet joint changes and also disc dehydration which is normal wear and tear changes. I had it explained that we're all going to have these changes once we reach middle age!. Facet joint too can be painful and you can have that injecrted too. I have but not all doctors agree with doing it. It certainly helped me as I was getting numbness as well as pain. This was done by a pain clinic. Have you had your MRI result s explained by the doctor?. Amitriptyline is widely given for any condition with pain because it's also an anti depressant but was found to help pain as its a muscle relaxant. It helps sleep so is taken at night. How are you finding MMF now your on the maximum dose?. I took it for Years and found it to be the best one I'd tried!. Sometimes though where pain in the spine is in a tiny spot, an injection gets to that area better than pills!. Your so right to be doing Pilates. I was advised to do it for rest of life with my spine damage. I had a one to one teacher who was great and now I just do the exercises at home as its hard for me to get to a studio. They keep pain there at bay. Your so right to say your Consuktant needs to join the dots. Hope you get the chance to go to your hero Knight!. Best of luck.x
Here is the report from my spinal MRI. If any of you understand any of it please let me know, I'd be grateful of any tips.
MRI Spine lumbar & sacral
MRI WHOLE SPINE
The lumbar spine was initially imaged.
It was noted that the central nerve canal was prominent in the lower thoracic spine at the T10 level and therefore T1w and T2w sagittal series have been performed through the cervical and thoracic area.
Alignment is maintained at all spinal levels other than straightening of the normal cervical lordosis which is consistent with pain or muscle spasm.
There is a small syrinx in the distal cord which extends from the upper border of T9 down to the mid-part of T11 but which is maximum at T10. Signal in the spinal cord is otherwise normal with no cord expansion and no evidence of a syrinx at any higher level.
The cranio-cervical junction is normal and the lumbar conus is in the normal position at L1 with no evidence of cord tethering.
There is a disc-osteophyte bar at C56, this is indenting the thecal sac bit is not impinging upon the cord and there is ample CSF maintained posterior to the cord at this level.
There are only minimal degenerative changes at the other cervical levels and in the thoracic area.
There are signal changes of disc dehydration in the multiple lower thoracic and lumbar discs except for the L5S1 disc which is of normal signal; there is also mild disc height reduction on the right side of the L34 and possible also the L45 discs.
At L45 there is a right lateral annular fissure and a small right lateral disc protrusion which is extending into the lower part of the right L4 foramen but does not appear to be impinging upon the emerging nerve. The overall canal diameter is maintained at this level and at all other lumbar levels.
There is no significant disc protrusion at any other lumbar level and no definite nerve root impingement at any lumbar level.
Axial images have been performed through the lowest 3 levels and there are moderate facet joint degenerative changes at L45 and on the right side of L5S1, with milder degenerative changes in the L34 joints and the left L5S1 joint.
Vertebral heights are maintained at all spinal levels. Here are a couple of small haemangiomata e.g. in L1 and L4 and probably in T12 which are of no clinical relevance, but there is no evidence of any sinister marrow pathology.
This is so similar to the MRI reports that resulted in me cancelling my booking for NHS double cervical discectomy. I'd been driven nearly bonkers with gradually increasing severe spinal pain & debilitation for years by then...but my research convinced me I'd do best to avoid major surgery. Instead I made neurosurgery review my case and refer me to my Pain Consultant whose diagnostic spinal nerve block injections established that bilateral cervical, lumbar, sacral facet joint denervation ops could numb my chronic pain enough to make life bearable...I had IMS deep dry needling rehab after each operation...and was in significantly less spine-related pain until I finally got even more relief from my oral lupus meds. Of course my spondylosis includes a significant degree of osteoarthritis. Sorry, but I forget whether you've seen any Pain Consultants since that MRI.
Thank you for your insight. No one has ever mentioned me seeing a Pain Consultant. Felt really low with it all last night. My varicose veins are getting bigger and bigger and my skin is itchy and tight over them. Sometimes I feel like I don't have the energy to fight anymore. Need to take a deep breath and carry on. xx
I haven't had any MRI reports to compare - but I think I would ask to try an approach similar to Coco's.
Why do I think that? This sentence: "Alignment is maintained at all spinal levels other than straightening of the normal cervical lordosis which is consistent with pain or muscle spasm."
Muscle spasm can cause an awful lot of things, especially pain - and mine was entirely muscular. My pain specialist was saving investigating the temporary denervation if we couldn't sort it in other ways - but we did.
PS - IMS and its equivalents is AWESOME for muscle problems!
Yes, I picked up on that bit too. I can't remember what I found now. here's something from a quick Google.
In a healthy spine, the cervical lordosis looks like a very wide C, with the C pointing toward the back of the neck. This can begin to straighten in a condition called cervical kyphosis, in which the curve straightens up or even bows in the other direction. ... An inward curve in the spine is called lordosis.
It concerns me that these things are just skimmed over.
A lot of it is because the doctors concerned don't know about it. I was told in the UK I had no spinal problems - by a doctor of about 85 (seriously, helping out as a locum) after the x-ray was done lying down and there was no physical examination. In Germany, several years of pain later, an orthopod examined me properly and did an x-ray standing - he could see the deviation of the spine from where it should be and even I could see it on the x-ray. That too was almost entirely due to muscle spasm and that is how it was managed - successfully, until I returned to the UK where I was pretty much laughed at for asking for preventative management to avoid the scoliosis and flattened spine developing again. The result was that over the years it came back although Pilates and physical therapies of various sorts helped delay the meltdown. But like the first time in Germany - whiplash in a car accident brought it all back.
My cervical spine has this too, the fall on head from height @ 7 yrs old caused damage to cervical spine & skull...all of which rebounded on rest of spine (it's all connected, damage in one area results in compensations etc in others)+ a lifetime of soft tissue denaturing due to SLE untreated + EDS ligamentous laxity = loads of alignment issues + muscle spasm...typical overlapping mess š...despite decades of Alexander technique + pilates, tai chi + massage + osteopathy etc etc (these all help of course, but until my SLE, EDS etc were diagnosed & pharmaceutical treatment begun things only marginally improved.,.although I feel certain I'd still have needed my Pain consultant's spinal facet joint denervation ops (even my chief of rheumatology agrees on this))
Interesting thread - like others on here, I have no trouble putting my hands flat on the floor with straight legs at age 43. Also thought totally normal lol. In fact every time I come on here I find something else I thought was normal that isn't haha! Keyes said exactly what I was going to say - could it be AS? After 25 years of negative blood tests and suffering horrendous auto-immune symptoms, I was finally tested for HLA B27 in October which is strongly linked to AS and *surprise* back it came positive. This was enough to warrant referral to a rheumy at long last, was supposed to go a few days ago but that was cancelled and rescheduled for March May be worth asking for the HLA B27 blood test as well? My GP was pretty useless regarding what AS could cause symptom-wise other than back pain, but Dr Google informs me bowel and eye problems are AS symptoms too and the damage is not limited to back joints either. The HLA B27 genetic marker can cause the white blood cells to attack healthy tissue as a protein is attached to them so I read, hence AS is auto-immune. And we all know auto-immune disease seems to be a case of BOGOF (at least!!)
Just starting out on this journey... getting a blood test in two days to see how to proceed.
I have had many symptoms of lupus but I had explained them all away with age, working too hard, repetitive work, getting run down, medicine side effects etc...then I got the butterfly rash which made me consider my symptoms might be a bit more than just everyday aging.
I have bursitis in my hip, S.I. joint issues, painful bunions, wrists, thumbs, and other things that I just chalked up to wear and tear so I am following this to see if you get any answers or relief!
Hello & welcome. I hope your diagnosis journey is a smooth one from now on, with great lupus doctors along the way. I'll update the post when I know more. Feel free to ask any questions. Happy to help however I can. I've posted a lot since joining at the end of 2013. Wendy
Hi Wendy. I was diagnosed with lupus when I was 23. I used to get rashes in the sun, and bad joint pains mainly in my legs. I had a few years with mild symptoms, but 35 years after my diagnosis, I am now suffering tendonitis. last summer it was in my left wrist, later in the year in my left and right shoulder, but could still lift my arms! More recently I have had a frozen left shoulder that just came on after being in a traffic jam ! My Doctor was not sympathetic and said I needed Physio, but it has been too painful to touch. I have found relief from taking high strength Ibuprofen, and following with Paracetamol 2 hours later, and also using Ice packs on my shoulder to reduce the inflammation. now the pain is reduced, I can now see a Chiropractor who are very good at helping reduce inflammation around the joints. Its not cheap, but at least you can then try to lead as normal a life as possible.
Hello Wendy39, I am 56 and in 2004 diagnosed with SLE. In 2009 ended up in hospital for over a week with a team of docters trying to figure out what was wrong. I could not move my pelvis at all. In the end I was diagnosed with SI joint dysfunction associated its my Lupus. I could not walk for 3 months and it took six months of physical therapy to regain my fitness. I also had the myofacia pain syndrome. The only type of pain killer that helped was the anti inflammatory medication Ketorolac Ended up my joint fused on its own from the inflammation. Get the very best physical therapist you can find and do all the stretching and strengthening exercises. My therapist actually is a professor who also trains students. I would like to mention I also saw different therapist whose specialty was management of the pain syndrome. Basically have to unlock everything then can begin the rehab. Everything has been pretty good since. Hope this helps. Ps. I also am hypermobil in hip.
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