Hi lovely forum friends !
Writing this post to check my sanity really 😳
Can any one relate to pain that moves around the body ? For example I’ll have wrist pain for a couple weeks , then it will move to arms . Then knees will swell and bruise . Then pain go back to shoulders !
Then the Lymph nodes will join in alongside some mouth ulcers !!!
Can anyone relate to these strange pain patterns ?
thanks so much for reading . I love and appreciate all your posts xx 😘 🐈
Joint pain that lasts a relatively short time and moves around the body is typical of something called palindromic rheumatism
versusarthritis.org/about-a....
rarediseases.info.nih.gov/d...
that’s really interesting thank you 🙏. I’ve been on hydroxy for 3 years and mepacrin for 1 year but it feels as though the drugs have lost their efficacy if that makes sense …
Thanks for posting this, you are a mine of information!
I have never heard of this before though have researched and read extensively. I know with SLE that joint pain is often migratory but most often symmetrical, I wonder whether that is the case with palindromic rheumatism? I wonder too how it is possible to distinguish between the two conditions if bloods don't clearly tell the Lupus story? I have a persistently positive ANA which jigs between 1:80 to 1:640 but nothing else is positive and even when all is seriously flaring I never show inflammation in my bloods.
I have UCTD with features of SLE, Dermatomyositis and Sjogrens but my joint issues are always migratory. Some days the ankles worse, sometimes the wrists etc. Mine are always symmetrical but often one joint worse than the other, ie left thumb worse than the right. Things can change by the hour, the day, the week, all is every changing, bit like a roller coaster!
I take Mycophenolate M , Hydroxy and need Depo Medrone jabs twice a year though I'm clinging on by my nails after about 4.5 months. I gave up chasing a label as the treatments for these things are much the same but it's hugely interesting when new info is discovered.
Thanks again for your contribution on this forum.
I believe all autoimmune disease overlaps and runs into one another - the label you get depends on the most prominent symptoms fitting into older diagnoses but as time passes and technology progresses the boundaries move and merge and separate. Since nothing has a cure - it is about identifying the best management strategy for you.
sounds very similar to me. I have the antiphospholipid antibodies which thicken the blood and also low platelets which make it thinner!🤣
Hi CSLO, see my reply 👆 to PMRpro ref. Palindromic Rheumatism.
I’m currently a few days into an awful Lupus flare, my body has no joints left which aren’t/haven’t been affected ☹️ It’s flipping awful especially as I can’t take any specific Lupus meds….Like you my bloods don’t show inflammatory markers - it’s all so bewildering. x
Hi PMRpro,
My husband has just that, one of his Rheumatologists gave the name to the Rheumatoid Arthritis he was diagnosed with several years ago.
A palindrome is a word, phrase or date which spells, reads the same forward as it does backwards, eg noon, deed & 02/02/2020…..fascinating stuff!
Yes i can certainly relate Tiggy.mine is often my hands wrists or elbows. Xx
thanks so much and yes forgot elbows 😳. Keep wrapped up cosy in those layers 😘xx
I can find myself sat in compression gloves for a couple of days only for it then to disappear.flits about too same joint opposite side 🤷♀️ xxx
Hi Tiggywoos oh yes I can relate. When I was first I’ll I thought I was losing my mind. The pain would be so severe in my pelvis that I could not sit or lie down, then inexplicably it moved to my chest and I was rushed to A& E with a suspected heart attack only to be told it was a pulled muscle. Since then I have got used to the constant moving of pain. Wrists, thumbs, shoulders, elbows, ankles, feet. My knees constantly hurt. It is so good to know that you are not alone with this isn’t it? Even though I would not wish it on anyone xxx
hey lovely , yes it’s good to know not alone but it’s sooo relentless isn’t it 🤦♀️. I can relate to the chest pain .. it’s terrifying isn’t it ? So nice to see the sun and lighter mornings . Big hugs xx
Honestly after 14 years now if I was actually having a heart attack I probably would not know it. The Cardiologist said it was Prinzmetal Angina?? …muscle spasms. The under tongue spray hr gave me helps but not if I have the mouth ulcers 😖. Yes it is relentless. My first thought on waking is what is hurting today. Huge Cwtches back to you xxx
prinzmental angina that’s a crazy name !!!blooming mouth ulcers look like I’ve grown extra teeth 🦷 sometimes 🤦♀️. We gotta try and smile havent we 🐶🐈. I know what you mean about that waking thought .. 😳. Take care angel xxx
You too lovely. Big Cwtches xxx
Dear CecilyParsley & Tiggywoos, the first thing I do when I get up in the morning, (before I leave my bed), is rub Ibuprofen Gel (10% WW POM), everywhere it hurts! Neck, shoulder/s, elbow, knees, back, ankles ….. even rub it on throughout the night! Used to be called Fenbid Forte but that’s been withdrawn. Good stuff I think which is effective….My husband uses it for his RA too & sings, 🎶 “Hands, shoulders, knees & toes…🎶” as he applies it! (To himself or me on my hard to reach hurting body parts!) Lol 😂
There is a such a thing as ‘Chest Wall Pain’ - Breast Clinic even gave me a leaflet about it ….. At least we all ‘get’ each other xx 😘 xx
How wonderful that you and your hubby help one another lol I have to be careful with the gels as an NSAID triggers my asthma I am so pleased to hear it eases your pain a little. Yes it is fab that we understand one another. My hubby thinks I am a hypochondriac 🙄 xxx
Hi Tiggywoos
I can also relate to this, base of toes, knuckles, ankles, wrists and neck. Less frequently elbows, knees, hips. Sometimes it mirrors on both sides, others it’s one sided, sometimes it’s right in the joint, other times I feel it more in the surrounding tissues, particularly tendons. It’s so good to know that it is not just me 😁 so I really appreciate you posting this question ✨
yes ! You’ve described it so well sometimes for me it’s as much the surrounding tissues / tendons as much as joints .Nothing helps really does it apart from hot bath (legs and feet out ) that’s another story 😳. Also find heat pack can help too . Thank you so much for taking time to reply 😘
HEAT!!! Even when the weather is warmer I have to get into bed with my electric blanket on. Obviously I turn it off but that initial heat is bliss.
Think this is where I’m odd (but possibly not the ONLY way 😆), sometimes yes to heat and sometimes just I can’t bear it! Think I maybe depends on how inflamed the joint/area is as then adding more heat…😬😮. Though I have been known to be bodily freezing and have blankets, hot water bottles over me, with the exception of the offending limbs dangling out in the air 🙄. Compression gloves do help my hands a bit though. This makes me wonder, can you get full body compression onesies with velcro strips so you can remove bits for the parts of the body that are ok that day?! 😆 ✨
me too, wrists, and hands. Some times on my feet.
I’m taking plaquenil 200 mgs a day and now for a second time trying xeljanz , an immunosuppressant, but the first time I had to stop it because it lowered my immune system so much that I got a respiratory infection.
The other thing worth mentioning is that I have an undifferentiated desease so my lupus is not compromising any organ. It makes me crazy how I can’t put an end to the joint pains.
Just read this thread Tiggy and it is clear you're not alone in this. How bizarre these conditions are.
I experience much the same as you and others have described here. Everything is ever changing! When the going gets tough I try to remember that I might feel absolutely fine in an hour! (Well absolutely fine is a bit of a stretch but I feel sure you know what I mean!)
yes I am struggling with the same problem. It causes me to get discouraged and depressed
I am so sorry to hear that .. I do understand . We try our best don’t we and sometimes it seems very unfair and upsetting . Thank goodness for our kind forum friends who understand x you take care
Me too 🤗
Absolutely. That's lupus for you. My pain moves around also.
Hi Tiggy, yes I definitely can relate to what you experience and am pleased to hear I’m not alone. My pain can alternate between wrist, elbow, hip, sacroiliac joint and ankles/feet. I’ve also had a LOT of pain in my left shoulder which has become more persistent over the last year and an x-ray has revealed arthritis in that shoulder.🙄 I don’t suppose I can blame Lupus for that but it deserves to be blamed when it puts us through so much else!🤣 Thanks for the post as it has no doubt reassured many of us that we are not going loopie as well as Lupie. 😆 Take care. 🤗xx
spotty love you messages as always 😁. I tend to use the phrase 🦇 💩 crazy 😜 but loopie much more polite 😂. Don’t get me started on shoulders bane of my life ! Don’t suppose you’re left handed too ? Hugs 🤗 xxxx
Yes, I’m left handed although fortunately use my right hand for many things like scissors, buttering scones 😋, crocheting, sewing etc. Are your shoulders arthritic? I’m wondering what will be done, if anything, with this painful shoulder because I can’t even dress without assistance (not that hubby minds helping!!🤣) as I can’t get the left arm above shoulder height. SO painful. Hugs back to you Tiggy. 🤗🤗xxxx
Hi Spotty-ewe,
I have loads of orthopaedic problems, recently seen (again), by MSKC who now use the phrase, ‘Wear & Repair’ for Osteoarthritis (which I also have in various locations).
Years ago, & to this day, the term used for OA was, ‘Wear & Tear.’
A knee X-ray done 2 weeks ago compared to 10 years ago shows marked improvement but it hurts way more! The APP (Advanced Physio Practitioner) reckons the ‘repair’ is down to me doing regular exercise & daily physio…🤷🏻♀️… No explanation for the increased pain though other than the Neuropathic Pathways idea (see my recent post with video called, ‘Tame the Beast.’
We continue to struggle on regardless …. x 🙃 x
Hi Turquoise, I also managed to vastly improve my arthritic knee by religiously doing the physio exercises I was given 15 years ago followed by regular exercise and by losing a stone in weight. Only the odd twinge from it now and it doesn’t impede long distance walking or hill-walking. 👍🏻 Long may that last.🙏🏻 I’m so sorry to hear your knee has become more painful. That’s very disappointing for you.
I left a comment on your post about Lorimer Moseley’s ‘Tame the Beast’ which I think is a very simplistic view and doesn’t take into account the uniqueness of the individual. Sadly I think some of the medical professionals we see are of the same opinion as him. So it is the luck of the draw who we get and how they treat us.
To struggle on regardless is all we can do.
Take care. 🤗 Xx
hi tiggywoos
I can also relate - and I don’t have Lupus 🤷♀️🤷♀️🤷♀️
It continues to amaze me the similarities between Lupus and Ehlers Danlos Syndrome (my dx)
😘😘😘
I think a lot of conditions overlap. I have hypermobility. My niece has EDS. The rheumatologist said she had no doubt I also had it but could not formally diagnose me because most of my joints have stiffened and seized up with arthritis. When I was young though I was very bendy and double jointed. thumbs hips knees shoulders etc. plus loads of dislocations - knees shoulders wrists ankles.
I now have osteo arthritis in most joints - had a knee replacement and thumb. Have metalwork in my shoulder from a break and hurt everywhere! Have been diagnosed with fibromyalgia and I’m pretty sure I have peripheral neuropathy (numbness burning shooting pains in legs also carpal tunnel)
I’m trying to just cope with cold packs, heat, massage etc but it’s hard. I can’t take strong painkillers- they all make me ill. I’ve done the Pregabalin amitriptyline route as well - terrible side effects and withdrawal. So a bit stuck now!
I also find my pain moves around. The knees and leg pain are constant but hands arm shoulder and back are random!
Hi CG
We seem to be very similar and I totally agree that AI syndromes and EDS symptoms greatly overlap. My rheumy recently dx’d me with EDS and referred me to our regional genetics clinic to give light on which particular type. My daughter is defo also hypermobile which is a worry of course.
As you well know, there is no effective medication for EDS and I also react badly to pain relief meds, or they don’t work at all. I had a particularly bad reaction to morphine after my knee replacement operation and it’s been mentioned that I might be intolerant to histamine. Have you been told this ?
Anyway, lovely to chat with someone in the same boat as me - if you know what I mean 🥰🥰🥰
Hi Meg - yes we do sound similar. I haven’t been told that about histamine but wouldn’t be surprised. I have lots of allergies. The latest one I have found is to the gel/coating on tens machine pads. I bought a tens hoping it would help the pain in my back. Only used it twice and came up in a red blistery rash which kept getting worse for a week even though I wasn’t using the tens! It was like a very itchy painful burn. Had to take steroids in the end to calm it down. Also think I’m allergic to the metal in my knee replacement 😔 It does get quite depressing taking different things hoping for relief and then finding you can’t tolerate them! 😬
Yes!! Constantly. i have not been diagnosed with Lupus but have some of the issues associated and one of the blood antibodies. Raynauds too. I thought I had Undifferentiated Inlammatory arthritis (they found synovitis in my wrists with a scan) but my notes now say Undifferentiated Connective Tissue and Lupus. I haven't asked about it as the initial meds are hydroxychloroquine and I've been on that for a few years now.
So yesterday my upper back, shoulders and elbow where awful and my feet seem to be getting bad again. It feels like there are 'strings' of pain from shoulder to elbow to wrist.
Oh yes forgot about the coccyx and sacroiliac joint. I had it a while ago and it has made a dramatic come back, it even hurts when I do a p**.
Some weeks I can't stand or walk because of the feet ad I can't sit because of the coccyx.
yes, I can - it’s the giving nature of Lupus! You never know what will hurt from one day to the next. Add Shingles to the list. Drop in temperature has been agony for me. I find natural remedies such as Turmeric tea, Olbas Oil rubbed into joints helps to ease symptoms.
Hey Tiggywoos, you’re speaking my language!!
This happens to me a lot, so you’re definitely not alone nor insane 🤯 xx
I can’t believe how common this “moving pain “ thing is 😳xxx
I am left handed and the left shoulder is where I get excruciating pain
Roving pains can be associated with lyme arthritis + or indeed hyperparathyroidism is another differential.
Hi! I found your comment about hyperparathyroidism and pain interesting. I have lupus and hyperparathyroidism and never realized it could add to the roving pain. Thanks for mentioning that.
Healing hugs.
Do not leave the adenoma in situ. It is slowly doing damage to your skeleton and can cause calcium deposits in the heart, organs etc . It is awful. I have had the op. Bone pain went from 10 to 3/4. But damage is done. Osteophyte complexes aplenty. Not to mention gastritis and kidney stones. Too much calcium is dangerous x
Hi, there, most definitely, we call it my Lupus pain, mine hits a part of my body very severely and can last up to 2 months, then vanish and within a few days, it occurs somewhere else xx
Hi Tiggywoos, I can relate to that , your sanity is fine , I can go to bed with one issue and wake up with another in a different place , no rhyme or reason why !!!!!!
Take care
My pain moves around my body from moment to moment, bloods either negative or Ana just 1:80, how did you guys get diagnosed without positive blood tests?
I had pml 75 scleroderma anti body , low C3 complement and consistent low white count plus lots of awful pictures of body parts ! X
Oh yes, the pain really moves. I can relate. My pain moves too. At times I just get frustrated for suffering one discomfort or the other. Take care my dear and hope you find ways to manage your pain. Xx
Hi All Strewth!! what a string this has turned out to be. It is indeed good to know that these weird happenings are common among lupies. My wife is constantly complaining of pains all over, usually hands, shoulders, knees etc.. Especially worrying is when it is in the chest area (which has been around on and off for several years now). When it is pointed out to our rheumy - he just says "that is the lupus" and when pressed to explain more he just said that it was better that he did not say any more. We think that he does not want to plant any worry seeds and cause a phycological spiral making things worse. Either that or he has no clue as to what it is.
We are brought up to believe that pain is the body's system to signal that there is a problem somewhere that may need fixing. However, when we get pain that seems to come and go in different parts of the body or seems to shift around the body it is more difficult to understand or explain.
I can see that a trapped nerve in the spine can cause pain the the legs etc. or a fault in a foot or ankle can cause, as a consequence, problems with the knees or hips. However, the pain we seem to be talking about here does not seem to have any understandable/physical explanation. I wonder whether someone with a knowledge of acupuncture or reflexology might have some thoughts on it?
Clearly, from the size of this discussion there is a great deal of common ground from patients perspective. Perhaps it would be a good idea for an article in the Lupus Magazine??
Food for thought.
beemanshrop what a great post thank you 🙏. I thought the same myself as this has raised so much interest.
All of the replies have been fantastic and so helpful but if there is anything scientific out there that lupus uk can come up with I’m sure people would love it !
I can move and it feels amazing. 
Never Ending Back Pain
Move it or lose it! But take someone with you when you do 😜
painful nostrils!!!! 
