lupus and connective tissue pain??

Hi all,does anyone suffer the dreaded tendonitis and connective tissue pain and soreness as well as the joint issues?for me the sore tissue seems to be more evident than joint issue ,the only way i can describe the pain you have been and done a very intense exercise class and your stiff and sore ,especially upper body ,and all of this with constant tender lymph glands and that horrid flu like feeling ,really struggling,its seems unless i sit on my backside all day and dont do anything (which isnt an option )then these symptoms are always presesnt and sometimes so bad im forced to rest ,it seems like im in a permenant flare with peaks within that flare ,since febuary this year ,so draining,and when there are small respites(that last a day or so) i feel like i can take on the world ,only to be reminded i cant ;(There was a time when i could run half marathons and swim the channel;)now even wiping my own backside hurts LOL!feeling lost and fed up;( and angry with this horrid disease,o.k rant over:) thanks guys sure you all understand?keep well brave.

29 Replies

  • Yes!!! With every flare-up and usually it's very bad. At frist my doctor thought it could be muscle atrophy becasue of hydroxychloroxine but the muscle turned up to be okay and instead ultrasound of my hands and arms showed that tendons were so swollen they looked twice their size :)

    It's a bit of a problem becasue tendonitis can casue more damage than SLE arthritis. It lead to shortening of tendons so your range of motion can decrease dramatically. You should try to avoid any intensive exercise while you have the symptoms and exersion of already stiff tissue can lead to more flare ups and more damage. But, you should try to keep the tendons flexible by doing gentle stretching through movement (the muscles and tendons should be warmed up).

    And of course you need to move becasue when the tissues warm up and blood flow increases it will relieve some of the pain and helps to clear up all the immune complexes more quickly. Just need to find the right balance...

  • Thanks heaps!i used to swim daily ,but cant at the moment ,a weekly swim feels like ive swam the channel;(it feels like my tendons are getting shorter and shorter ,when i try to stretch it feels like ther gonna snap and are so sore ,even walking hurts them ,its a tough one because ,were supposed to keep moving get the blood pumping and help keep good heart health ,but if i cant move freely how can i do this ?My rheumy has said he feels the tendon pain issue is more fibromyalgia than lupus????who knows??i just know its a chronic problem and 8 months of very sore muscles and tendons seems a long time ?i think we can all except pain if you know theres respite ahead ,but when its on going ...........i have a few heart issues and keeping fit gave me peice of mind that i was helping look after my heart,now i cant so how can i look after my heart other than through diet ,which is hard as food seems to be my freind at the moment ,but cant burn it off so pounds are ever evident;( its all such an effort,thanks for your advice ,brave....p.s really concerned about these sore lymph glands that doctors dont seem botherd about,any info would be great?

  • brave if their is a gym near you try walking up and down in the water this reduces the impact load but at the same time works the ligaments etc.

  • Well, sore lymph nodes are common in lupus patients basically becasue you have an active inflammation going on in your body and lymphnodes are major sites of white blood cell maturation and expansion. So it's like when you get a viral infection, so when you have a flare up you lymph nodes get super active and that causes swelling and discomfort/pain. However, you cannot exclude other explanations, such as infection itself. Unfortunately when you have a flare up the infection can be masked by lupus symptoms. Are there particular sites that are sore, is it just neck,throat we are talking about?

  • hi hun

    I can relate to the muscle pains you are experiencing I could have written your post! I was baking the other day with my toddler and when I was mixing the ingredients my arms felt like I had lifted 10 ton weights.It really gets me down as I dont know what to do to prevent/help it and like you I cant just sit still all day...even though my body would love me to lol.

  • lulu 85...thats exactly what it feels like ,even making a roast dinner for my family leaves me in immense pain,its sucks and is sooooooooo depressing at 38yrs to feel 88yrs ;( were like the tin man from wizard of oz LOL!just need a bit of oil;)

  • Artemis5 ......thankyou you know your stuff!i get the whole lymph gland involvement,mine have been up since febuary ,but i have also had this problem for the last decade ,but they used to only come up when i was ill or had overdone things,i suppose because lupus has been having fun with me there staying inflamed ,my white cell count was still on the low side so doctor ruled out infection??however i do wander if i have a low grade bladder infection as ive been having bladder probs since febuary which didnt respond with longterm antibiotics ,so they think it may be interstitial cystitis ??having a cystoscopy in a few weeks to see whats going on ??i get intermittent white cells and blood in urine samples but not enough for treatment.who knows the list is endless??i am really thankfull in your info on lymph gland involvement .thats the one thing that bothers me,and yes its so hard sometimes to tell the difference between infection and flare??as if it could get any more complicated?thanks for all your help ,healthy living always ,brave;)

  • I have similar pain around my chest, breast muscle and underarms. Rheumie checked heart and lungs and all fine but the pain remains and it doesn't seem to respond to antiinflamatories. I have started to look into fibromyalgia as a cause for this as no one seems to know why I have it. I find that light stretches help a bit and wet heat too but they don't resolve it. I would feel better knowing the cause so I can then understand the treatment, my doctor seems to want to get rid of the pain first, then investigate the cause, which I find strange. Infection worries me too but there is no way of finding out other than wait weeks for an appointment, that's so frustrating. I'm sorry, this is not very helpful to you other than to show that you are not alone!

  • Hello Brave - you sound just like me - aches and pains everywhere, and permanently feel like I've been running marathons. I'm 58 and feel 88. Also have microscopic haematuria and had a cystoscopy which showed some inflammation but nothing really nasty.

    Been told I have fibromyalgia, hypermobile joints and osteoarthritis in my hips knees and neck as a result of hypermobility. Also have swollen lymph nodes in my neck for a year but no-one seems bothered about that.

    Have tried steroids but didn't seem to do much, hence fibro and hypermobiity seem to be implicated.

    I'm currently seeing an NHS physio, who was brilliant and gave me some specific exercises which are helping, especially with the chest and rib pain and also loosening up my hip joint. Am just going to start Pilates at the NHS hospital and then a return to health class. Might be worth asking if you can get a referral?? I found the NHS physio was miles better than all the previous physios I've seen.

    hugs xxx

  • Hi. What kind of exercises do you do to help loosen the hip joint? I am looking for suggestions/help with that issue too.

  • I find swimming - gentle slow breast stroke, You get the blood into your painful joints and muscles while being weightless. Over arm is too strenuous so I find steady breast stroke is the answer. I have noticed a marked improvement in joint pain and stiffness. At first I could only do a couple of laps but am now up to 500m which takes me 20 mins. Fortunately I have a heated public pool near where I live - and it gets me through the winters - well worth trying to help with stiffness and joint pain.

  • Marypw...thankyou,i was thinking of asking for a referal for physio,i too get chest and rib pain,it really feels like i have had ten rounds with mike! i know as females our hormones can play a part knowing i have already very low hormone levels at 38 yrs i feel maybe we should address them also,doc said that autoimmune disease can cause early menopause ,great;(this whole lupus thing is so exhausting,physically and mentally,thanks for your advice,brave

  • purple top,thanks for your info<its so good to hear from like minded people,brave;)

  • This is going to sound wrong!!!

    But - it's such a relief that others are feeling exactly how I do - I haven't been struck by madness after all!!

    Have recently changed GP's - what a difference. He listened to me and explained things to me for the first time....

    Having a bad time myself at the moment and waiting for todays blood results, all I want to do is rest or sleep, and feel flu like all the time...

    But thanks to this site, I know I'm not mad or alone...


  • U HAVE NEVER BEEN MAD ITS THIS BLEEDING LUPUS one day its here one day its their. it can go as fast as it comes does me but takes 2 years hard work

  • Do what your body wants - rest and sleep. Go to bed early and take it easy. Be gentle with yourself and you will aid your recovery. All the best.

  • Gotta love CT ;0) It's a pain in the arse, especially when it feels like it's 'snapped' (only way I can describe it) & u can't hold anything :0(

  • I get burning pains in my arms and legs, and this seems to be inflammation of the tendons from my wrists to elbows and my knees too. It's been bad this year, I've had to give up sewing (which is gutting because this was my vocation as a textile artist). It calms down every now and then when I stop trying to do too much with my hands, and gets worse during flares. Unfortunately it's flared again recently when I went swimming on the weekend, afterwards it got much worse. It feels throbbing here and there, painful on movement, and there is weakness there too. I'm going to see my consultant soon so I"ll ask him about it then.

  • Take it slowly - rest as much as possible. Trouble is with Lupus you pay for any action that you have over done or pushed yourself too hard. take it easy.

  • Thank you - this thread is an old post from 4 years ago. I thought I' d let you know that I've now been given a diagnosis of Fibromyalgia for the symptoms I've described above, which continued to worsen until I was just hurting all over in my soft tissues (muscles, nerves, tendons and around the joints). The diagnosis came after an MRI which showed no involvement of Lupus attacking the nervous system. Strangely the Lupus is now in remission (or 'currently inactive' as my consultant says) and this means that I'm now just treating the FM. But the advice you give is exactly the same for FM - I can never push myself too hard.

  • Thanks - I realised after I pushed send...that this was four years ago!!! But good to hear you have a diagnosis and know how to manage both these illnesses. Not easy. I swim every second day in a public heated pool and have gone from one lap to 20 in the past six months. Worth considering for your condition as you are weightly and forcing blood into your joints and muscles with gently breast stroke - I dont even put my head under the water!! But feel much stronger and better. The frog leg and arm movement helps the hips and shoulders. But take it VERY slowly....and build up - if you can. Good luck!

  • Yes I would like to do some swimming but I've not felt well enough for ages. I will work up to it!

  • hi

    we had a hot summer about 13 years ago and one day i woke up and could not move

    it took me an hour to get to the docs. on a normal day it would be 5 mins.

    i got there and walked in and said "i have rhumertoid arthritis"

    he said "you dont",

    "yes i do have it" and again "he said i dont"

    so this goes on and he said "you have tendenitis"

    now he had not checked me and had not seen me for at least 12 months.

    i said your wrong, so he goes we will do bloods and xrays.

    the results come back i have tendenitis.

    my gp is a rhummy and a consultant i did not know that when i saw him lol. nicx

  • I understand  completely!   I wish I had been able to tell my Mom I understood how miserable she must have been.  She died from LUPUS related kidney/liver failure, before I was diagnosed.  At first the ligament on the inside of my right knee was sore, continued to get worse, until I couldn't  stand any pressure  on it at all.  Then the outside tendon, whole knee, then the inside tendon on my left knee but it didn't stop at the knee, the soreness  continued down  into  the calf.  Now it hurts to walk on both knees plus I have nerve damage in my back and left led from a damaged l5s1 disk that I was stupid and let them "work "on.  Advice y'all, if they need to do spinal disc surgery  and remove the disc, fine, but never let them trim or cut the disc and leave it in, your disc leaks tumor necrosis  factor  and this is what irritates and damages the nerves and joints.   Never leave it in, fusion may cause long tern arthritis but in some cases, the tumor necrosis  factor  will cripple you from continual leakage in the joint!  Off that soap box, where did I put the LUPUS  box?  There it is!  My family has a long history of Lupus and I knew it was bad and that I stood a chance of developing it, but I never knew how wide spread, body wise, it could be!

  • Try GoPo vitamin c as well as oats for inflammation and lubrication of joints .Vit c will help with soft tissue pain avoid sugar as that can lead to inflammation around joints .static execise for just a few minutes when you can will keep circulation going and that is really important .The rest in between little tasks is important try and think of something that will distract you from pain and situation this is a period of grief and adjustment  ,doing something even if it is for a few minutes at a time and then resting is better than not being able to do it at all try and think laterally ,not being able to do stuff like you used to is frustrating......but you are still in there and it is about seeing away round  .

    Life changing illnesses are difficult and you realise how complex and challenging it all is whilst the world around you bustles by and it is so easy to get separated try and maintain social contact with friends even if it is a text as isolation won't be helpful you are properly feeling separate enough.

    Personally I would research nuitional options to help you and good luck.

  • Completely understand the rants need to be written .For me its like throwing out my feeling I keep pent up.Yes these are my exact symptoms and have been for almost a year now.My tendons are so tight they feel they may snap I hope they wont but it feels like they will.And as someone who used to climb mountains litterally I can totally relate to the soreness of an intense workout.Tho we get no benifit with this illness.I try to look at it as each day."I have to get thru today.And maybe tomorrow will be better but 1 day at a time and endure as much as I can .Then I break down total nervous breakdown,but its how we must stand up the next day.At least we live to fight another day.I know this lupus fight seems endless tho i would like to think we will have an end.I wish for cure some day hopefully they will come up with one.

  • hi brave i know how u feel ive just done a mile wak and me ligaments feel like i have done a mile i keep wondering if its the prednisolone tablets at 5 mg that does me im wondering if anyone else is on this stuff cos it says on the packet ligament attachment points 10 weeks ago i could do 5 miles with just a bit of tingling in me feet but now bloody hell its chaotic been diagnosed with sle 4 years ago had the thing 5 times now then clears up then back again Do you get ankle main with it like the bone is going to come out the side of your foot.

    regards john

  • My ankles feel broke.literally both of them

  • ive just read most of the comments on here so here r the most important things to do regards knee exersises.

    1 do 10 reps of the quads raising your leg using your knee while sat down or pillow underneath leg hold that leg amd think about the mussel.

    2 next And this is most important most important VMO mussle exersise tilt leg at 45 deg whilst same as above and raise AND HOLD AND THINK ABOUT THE VMO MUSSEL AS YOU HOLD.

    just doing the no 1 on here will only work the quad mussle and make a clunking noise when walking under you knee cap The vmo will work in tandem with the quad to pull the knee aligment in the correct position HOPE THIS IS OF USE TO PEOPLE.

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