Hello - for the past 6 months I have been getting shoulder pain (described by personal trainer as extremely tight scapula); that goes into my breast; rib pain that travels down to my SI joint and pelvis. My physio therapist explains that the SI joint is very lose and is causing extremely tight muscles. I also have a leg length discrepancy due to an automobile accident as a child in which the growth plate in my right knee was broken. The pain was starting to get better but just this past week the extreme pain has come back again - I am feeling so defeated. Has anyone had anything similar to this - if so how was it treated -was it an injury or could be osteoporosis or arthritis or something else. I am a 42 year old female and have always had pain that resulted from the accident. Any words or wisdom, thought or opinions are greatly appreciated.
Shoulder; rib; breast;SI joint pain: Hello - for... - LUPUS UK
Shoulder; rib; breast;SI joint pain
Hello & welcome. Am v much feeling for you, partly cause I've been managing similar issues all my life. Am 63 & have infant onset lupus + the connective tissue disorder vascular Ehlers danlos hypermobility complicating my immune dysfunction.
My infancy SLE diagnosis got lost, but was recovered nearly 6 years ago, so I only received systemic meds for immune dysfunction during emergencies...until 2011. A childhood "fall on head from height" caused enough spine damage to mean the NHS used the injury as a diagnostic scapegoat for my progressive multisystem debilitation for decades.
When was your lupus diagnosed & how long have you been on oral systemic meds? Also are you hypermobile, and if yes, do you know what type?
I ask because, due to my EDS hypermobile global ligamentous laxity, for decades all my highly skilled and otherwise totally excellent body work therapists missed that I was living with increasing tendon & muscle tightening due to my SLE + early onset sjogrens going unrecognised & untreated. The prescription NSAIDs & analgesics the NHS prescribed for decades helped hardly at all. So, am wondering if your body work professionals could be missing tendon tightening due to your ligamentous laxity
In the late 1990s NHS neurosurgery had booked me in for a double cervical discectomy...at the last mo I sidestepped this via referral to Pain Clinic: my hero pain consultant proceeded to minimise my spine condition & associated referred pain via a series of bilateral cervical, lumbar & sacral facet joint denervation operations to ALL facet joints in those regions (had to have each joint fine 2x over the course of 10+ years). My pain consultant prescribed rehab IMS which is a professional technique named Intramuscular Stimulation: a type of deep dry needling acupuncture only practiced by certified therapists - usually pain specialists, gps & physios
All this helped numb the actual spine injury considerably, although unrecognised synovitis pain associated cervical & sacral synovial joint remained: pelvic girdle/sacrum/hip pain, scapula/shoulder pain etc. Fortunately my daily SLE combined therapy treatment plan have virtually cleared up all that lingering pain + helped my tendons to respond to rehab physio aimed at stretching them to relieve pain even further. All this has made me acutely aware of how important the right daily prescription systemic treatment plan is in cases like mine. Body work + the right systemic meds + conscientious lifestyle management + the solidarity of this wonderful forum are making all the diff to my quality of life now
I'll just add, that having practised yoga, pilates & tai chi conscientiously for decades with great benefits, the body work that has been & continues to be the v most helpful is the Alexander Technique
I could go on & on....apologies
Am sure you'll get some great replies
Take care
🍀🍀🍀🍀 coco
Hi there,
I am sorry to hear that you are experiencing this pain.
You might find our leaflet on the joints and muscles which can be downloaded or requested on our website useful. lupusuk.org.uk/wp-content/u...
Is the leg-length difference compensated for? Has your physiotherapist considered the possibility of myofascial pain syndrome and hip bursitis?
What you describe is very similar to problems I have had - due to very tight and spasmed back muscles. Plus I have had a few episodes of trochanteric bursitis (mainly due to the vasculitis I have, polymyalgia rheumatica).
I have just had occasion to do a bit of research for someone who has just had a hip replacement - and now seems to me to have developed hip bursitis as this surgery is a risk factor - but another risk factor I noticed for bursitis is a difference in leg length.
My sacroiliac problem was diagnosed and then treated by the orthopaedic specialists and the pain clinic at my local hospital here in Italy. Initially I was given infusions of a painkiller plus high dose steroid in the morning and valium at night. Unfortunately I developed a rare but known response to iv valium - atrial fibrillation - after the second and third infusions so it had to be stopped before all was well. I was therefore sent to the pain specialist for the slower route! They diagnosed myofascial pain syndrome and approached the spasmed muscles and the trigger points that forms using local steroid injections and manual mobilisation.
They also use a technique called needling - used here in mainland Europe in mainstream medicine, it is available in the USA and in the UK though I don't know how to tell you where. It can be done as dry or wet needling. Wiki defines it: "Dry needling, also known as myofascial trigger point dry needling,) is the use of either solid filiform needles (also referred to as acupuncture needles) or hollow-core hypodermic needles for therapy of muscle pain, including pain related to myofascial pain syndrome." In wet needling it is done using a solution in the hypodermic syringe (which can be just sterile saline, a local anaesthetic or a steroid) and they do repeated injections into the surface of the muscle anywhere that is particularly painful. It is said to trigger the muscle to relax. It is really rather painful at the time for a few seconds each time the needle is put in. Dry needling is said to be less painful. But I haven't met anyone who wouldn't go back for another session - because it does work!
Backs are very amazing things - the muscles do a fantastic job of keeping us upright by continually adjusting to our posture and the surface we walk on. They are very forgiving and you can use and abuse them for a long time - but eventually they say "Had enough!" and go into spasm in an attempt to protect themselves. And it hurts! Your loose SI joint and different leg lengths have put even more strain on them - and I've no doubt there are other factors, you probably did something that upset them - lifted something badly, carried a shopping bag, caught your head getting out of the car, were on a bus and it stopped and you didn't, were away in a different bed with a different pillow. These are all factors that have triggered mine in the past. The cherry on the top for me was a wisdom tooth that was coming through squint and affected my bite - which stressed my neck and shoulder muscles. It all improved once it was removed - but after 3 years pretty much pain-free it's niggling again. I had needling last week which has helped some, I have a referral for physio.
And Bowen therapy did help a lot in the past before it was all diagnosed - it is worth a try if you can afford it. It's very relaxing and far gentler than a massage for a sore back.
Hello PMRpro...when I read your comments re the special dry needling I thought: WOW! Cause your description sounds A LOT like IMS - which I've mentioned in my reply, above. Here is a link that gives a pretty good explanation of IMS (which was developed in Canada & is mostly practiced there + in the USA, but there are practitioners here in the uk + on the continent). Whatever, here is that link:
And here is another:
whythingshurt.com/what-is-i...
I never had to have any "wet needling" although my hero Pain Consultant used to say that when he observed via radiography how his patients' reacted to his denervations operations, these reactions are very like those in deep acupuncture...and, of course, these operations employ a form of what I guess you could call wet needling although in operating room conditions with radiography etc
Anyway, my spinal chronic pain condition had become well entrenched by the time I finally got referred to my PC (thanks to 20 years bring messed around by well-intentioned osteopaths & chiropractors way out of their depth in my case), but even so 10 years of denervation operation sessions + rehab IMS dry needling turned my case around.
I vvvv seldom meet anyone on forums who has experienced this sort of certified specialist dry needling...for me, it was usually painful during the treatments but nowhere near as painful as traditional Chinese acupuncture which felt like torture to me. And the immediate benefits of deep dry needling made the pain totally worthwhile...unlike trad acupuncture which never helped me one iota... am so glad you posted!
👏👏👏👏🌟🌟🌟🌟
I didn't know it was recognised in the UK - hallelujah!
I've never had acupuncture so can't compare - everyone has always sworn it is painless!
I first had needling (called quaddeln in German) from my GP in Germany, using saline I think, and then he sent me for AMAZING massage! Slow but sure! When I returned to the UK it wasn't entirely sorted out and I asked for physio - and was treated like the original fraud. My GP here in Italy did it with lignocaine last week. It has made a difference but there are still dodgy bits.
So interesting: thanks for the background!
YES, it's in the uk...my first series of IMS treatments were in 1998...then again after each series of spinal facet joint denervations ops...approx every 3 years, the last in 2010 I think. My impression is that you have to search out uk IMS practitioners....I've yet to see IMS publicised here...which puzzles me cause it is SO EFFECTIVE
Over the nightmare decades before I finally got referred to my Pain Consultant, I conscientiously gave several different perfectly capable trad acupuncturists a good trial (each had 3 months to prove they could help me). They all failed totally. They said my soft tissues were like iron: they could barely get the needles in...meanwhile every attempt felt agonisingly painful to me. I'll never forget the contrast with IMS: my first IMS practitioner deftly thrust the needle in with a sort of snap afterwards: their training must be extraordinary. Now any of my medics who are willing to comment say that my ehlers danlos + the denaturing in my soft tissues due to decades of infant onset lupus going without daily systemic treatment setting me up for nightmare chronic spine pain due to tendon tightening (as much as the childhood injury) accounts for my hyperreactivity to trad acupuncture...seems a good theory to me 🤗. I've met only 1 other person who found trad acupuncture excruciatingly painful: she has EDS + SLE 😆
Mmmm - wet needling is a sort of stinging burn (only words i can think of that fit anywhere near) but just for a split second. It is very common to be sitting outside the room and hear the patient ahead of you squealing which can't be encouraging for new patients! I start laughing much to the doctors' amazement! And curl and release my toes. But we all go back for more - because, as you say, it WORKS so effectively.
Now I know you can get it in the UK - I must discuss this with the PMR research lot. Are there independent practitioners or is it only done in pain clinics?
Have answered my own question - but of course they are all south of Leicester! Are there physios/doctors in the NHS who do it?
Stinging burn is good: I can relate to that, even though all my IMS was dry
😂😂😂😂I know: I used to feel such compelling glee at each IMS treatment that my physios told me I was their star...we used to chat away while they worked: me yelping at each insertion...they told me I was v unusual cause I bled heavily (they were constantly mopping me up...apparently this is also characteristic of my sort of vascular EDS)
As far as I know, IMS in the uk is practiced by any health professional who bothers to take the IMS course & qualify: pain consultants, physios, gps, whoever
E.g. My IMS practitioners were both independent physios in Newmarket to whom my Pain Consultant had referred me (originally, I was referred to my PC in 1998 on the NHS by my neurosurgeon. But then I switched to private in order to be treated without 1 1/2 year delay...and I continue to see him privately because I continue to hear about ghastly delays etc at NHS pain clinics). Newmarket physios get a lot of business from jockeys (my first IMS physio used to treat lester piggott ) ...I've always wondered if this made Newmarket physios a bit more open minded & progressive about advanced treatment techniques like IMS?
OMG: 🌟🌟🌟🌟it's wonderful to know I can get IMS on the continent if I can't get it here
THANKS
😘😘😘😘
ANY sport physio sees things through a very different sort of lens I think. It infuriates me when I KNOW that I have something that if I was Andy Murray or a top skier it would be managed far better by their physiotherapist.
I don't bleed - despite being on anticoagulant therapy - which always surprised Astrid. But she always sent me home with a patchwork of dressings all over my back!
My lovely pain clinic lady (Astrid) is now a GP locally but is doing the pain stuff privately I believe - so if you need, we have a bed! This last lot of quaddeln was done by my GP - so it was FREE!
I found a LOAD of people/clinics who do it within striking distance of you though - so I doubt you'll run out of options yet!
Hello - my leg length discrepancy has not been addressed yet however I have an appt next week to have a lift made. I hope it will go well as the last lift I had just caused more problems for me. What is Bowen therapy - I have never heard of it before.
I will ask my physiotherapist about the possibility of hip bursitis and myofascial pain syndrome - she has never made any reference to either of these two and was just wondering if I could possibly have arthritis which I was checked for a couple of years ago when I also had a previous flare up.
Do you find the weather effects your condition at all? I live in Canada and it rains here all the time.
bowen4life.com/ gives a pretty good explanation of what it is/how it is done. It is sort of chiropractic for soft tissue - with no side effects or risks although I do know people who say they had flares of their polymyalgia rheumatica after a session (it will release inflammatory substances from hardened muscle fibres which would mimic a PMR flare).
I was convinced the bursitis pain was the onset of OA in my hips - I don't know if the pains are similar since now it is obvious I DON'T have OA.
As I said in my reply to your other post:
Apparently a study has recently been published in the UK about the effect weather has on pain, especially rheumatic/arthritic type pain. I'd give you a link if I had one - must look for one! They claim it is a "first" - but I hate to tell them, the Germans did such studies years ago and even provide bio-weather-forecasts as to which illness groups may have problems the next day!
Where do you live? West coast? I spent a week cruising the inside passage and over a week in Vancouver this summer. We were so lucky with the weather - although we had 2 days of rain on the cruise and Ketchikan lived up to its reputation the rest of the time was glorious sun!
Forgot to say - if you have had a long time of leg length discrepancy your body muscles, especially back ones, and posture will have adopted a state that is least uncomfortable for you, it's a natural thing to do on your part. If that is then changed by providing a fully built up shoe everything is suddenly changed without you having a chance to adapt and that in itself will cause pain as your muscles struggle adapt to the change. I don't know how to address that problem - but it MUST be addressed with at the very least physiotherapy and probably with other soft tissue therapies. And the IMS therapy that BC has talked about would probably help.
I have exactly the same problem. Car accident at age 9. One short leg. A sponylolithesis in L4/L5. Repetative strain injury in both wrists. Years of physio. Pain clinic endless specialists. Now finally tested positive for lupus antibodies but ana negative. Mainly get fobbed off with the learn to live with it response or the lets dope you up to the max. Waiting for my follow up appt with rheumatologist in jan . I think she is going to try me on methotrexate.
Have decided to retire from work and see if a vhange of lifedtyle will help.
I am sorry to hear how challenging things have been for you. My accident happened when I was 12 years old - I would never have thought something that happened so long would still be effecting me later on in life. I am having a shoe lift made next week, hopefully it will help a bit. Please keep in touch and let me know how your appt in January goes - I hope they can find something that will help you. I am going for a massage tomorrow - hopefully it will bring some relief before. Do you find the dampness makes your condition worse? Since the seasons have changed I have been in more pain - I live in a very rainy city. Take care 
Apparently a study has recently been published in the UK about the effect weather has on pain, especially rheumatic/arthritic type pain. I'd give you a link if I had one - must look for one! They claim it is a "first" - but I hate to tell them, the Germans did such studies years ago and even provide bio-weather-forecasts as to which illness groups may have problems the next day!
Hi PMRpro , could this be the study that you are thinking of - cloudywithachanceofpain.com/
Very probably, thanks Paul.
As I say though - it was work that was done yonks ago in Germany and the whole of mainland Europe takes weather-related flares in many disorders seriously! But then, we're a bit weird over here, we take herbal medicine and complementary therapies fairly seriously too!!!!!! Mainly because they DO contribute a lot to recovery.
Cold and damp weather kill me unfortunately. I must admit i seem to be getting less able to tolerate the cold and damp as i get older but i love hot weather and dont seem to suffer with the heat like some other lupus sufferers. I have regular back massages i think they have kept me going over the last 6 years. I am sure my childhood accident is somehow connected to my ailments but i guess back in the 70's they didnt know as much as they know now.
Will keep you updated.
Meandwiz: re the IMS deep needling technique PMRpro & I are discussing above:
IMS was invented in Canada....am fairly sure there are practitioners all over Canada...
Edge of breast/Ribcage/Shoulder Blade Aches & Pains
My shoulder still hurts 
Joint pain. 
