Burning ,raw ,connective tissue pain:(((

Total agony guys ;((((((cant take this pain ,i never expected the raw ,burning incredibly stiff ,a feeling like the connective tissue that links the tendons to the bones are hanging on for dear life ,like there torn and worn ,particularly from back of neck ,to base of spine ,around ribcage ,cant lie down ,cant sit down ,standing gives respite but thats not an option for long ,this awfull inflamed feeling is taking over my body ,its affects my bladder and pelvis also ,the flu like feelings come and go but this pain is persistant and getting worse ,i cant understand why this has gotten worse and worse over 8 months ,where has this come from i ask?is this normal for lupus /fibromyalgia???Any others out there understand this?This is torture :( thankyou team x


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17 Replies

  • Get u're arse 2 the docs. I have MCT which affects my neck & back but considering it's FROM u're neck & going rite down the whole of u're back, plus rib cage, I don't like the sound of it. Sounds like something else has come 2 play too in my opinion :0/ x

  • I have done ,they make nothing of it ,it feels like tendon pain ,just escalated ?Sher thankyou ,whats MCT?

  • Mixed connective tissue syndrome. I just do hot baths, heated pillows on my neck, massages, anything just 2 dull it down but I also madly rotate my head as sometimes it's enough 2 kind of 'crick it' so it doesn't hurt so much. The pain isn't constant 4 me, must admit. My back seems 2 b worse in the morning or if I've been sweeping the floor or something, then I suddenly feel the tendons etc 'go'. Sorry I couldn't b more help :0(

  • Thats cool ,thanks heaps sher ;)

  • How do you manage your pain in neck and back ?do you find lying in bed agony?is the pain there all of the time?questions questions ;)

  • not with tendons? feels more like muscles in arms,back and neck since october and started in breast muscles monday aches constantly and get severe pains (in bursts)with certain movements(had to change way i put on clothes) left arm worse than right and weirdly right boob worse than left?i get burning in neck but hav oesto arth there and pains/aches in joints .had to buy shopping trolley(get a lot slagging off for that)because i can't carry shopping.legs/feet not bad mostly joint pain.i havn't been diagnosed with anything and waiting to hear for 1st app with rhuemy.i can handle pain but not when 24/7 for months with no break.i might not be in totally agony like you brave but i know where you coming from and i really hope you can get help to ease your pain.should try hot bath like sher said.sometimes wish i had hot tub so i could live in it good luck x

  • with MCT can be muscles, tendons OR ligaments, sometimes the whole shebang :0(

  • Isnt lupus connecvtive tissue disease?my consultant always refers to lupus as connective tissue disease,for me connective tissue pain is the biggest problem ,i believe thats whats responsible for all my probs including my bladder?As a child was always pulling ligaments etc ,i was always injured with sport ,i just thought this was normal ?obviously not?thanks guys

  • lupus IS a connective tissue disease but MIXED connective tissue has parts of scleroderma & some other nasties with it too. Supposedly the probs with muscles etc is supposed 2 b slightly different than with MCT but I wouldn't possibly know & couldn't tell u how as I have both. I think it varies on how mild/severe u're lupus is too but like I said, I'm not sure

  • something 2 ask u're rheumy about when u next go

  • He speaks off lupus ,he speaks of MCTD , he speaks of fibromyalgia,I have all ,he explained to me that lupus would have been evident for years ,MCTD,in amongst it ,and fibromyalgia ,i treat them as a whole ,as it gets too complicated and treatment remains the same for them all except fibro,this is the one that requires different meds?Im considering some ssris to raise my seretonin levels to see if it helps pain?although reluctant to start them ,but its worth a try ,i just need to read some more positives of ssris as im the kinda person who needs to know lots of info to ease my mind:)I seem to have a pretty laid back rheumy and as this is a small island theres only one lol!he tried plaquenil,i reacted badly ,so just pain meds for me and steriods in an emergency ,its exhausting being unwell .Thanks heaps :)

  • Hi brave,

    I've never been diagnosed with MCTD (other than Lupus that is ;)) and I've been suffering from tendonitis and musle pain a lot(!) AT the moment I have the same, it feels like i've exercised much too much the day before and every single muscle is sore and stiff. Hot baths with dead sea salt help and also diclofenac is making the pain bearable. In my case the pain is the worse in the morning and gets bad again in the early evening.

  • Artemis,thats the kinda a pattern i run with the tendonitis and muscle pain,its agony ,this morning out of the blue i had this random tendon pain that stretched across either collar bone and into the shoulder tendon ,its was a stabbbing spasm like cramp ,every time i took a deep breath the pain was even worse ,it eased but now both my shoulder tendons feel like ive a heavy swim session and ripped them ,i havent done anything of the sort ,its so weird ,also feels like its affecting my throat muscles and neck tendons ,Is the dead sea salt the same as epsom salt ?i like you tend to have a small window between 1 and 3 where my pain is normally???bearable only to be hit by a wave of fatigue and pain then on in !

  • Dead sea salts are actually collected from Dead Sea and are very rich in minerals. They are supposed to have anti-inflammatory and soothing activity both on muscles and also for skin (for people who suffer from lupus skin manifestations). I buy my slts from company called Magik on Amazon but there are plenty of different ones. I don't know if that's a placebo but the baths with this salt seem to help me (or maybe it's also the fact that the water is nice and warm, and I soak my aching body while reading a book and and eating/drinking something nice).

    I have the same problem with neck and shoulders, the stiffness gets so bad that I get horrible headaches. I used to put naproxen all over my neck and shoulders but that helped just a little. It's very annoying when your body feels like it's been just hit by a truck.

    BTw. I heard that eating diary or even lean protein can make all these symptoms worse but I haven't tested it as I'm a big fan of cheese and all kinds of protein shakes (I'm very underweight so I need to stuff myself with food just to keep reasonable amount of weight)...

  • Thankyou,wish i was underweight lol!cant stop eating ,food is my buddy !

  • I have a similar pain down the sciatic nerve in my left leg it's horrible but to have it all over must be hell. so sorry to hear that you are feeling like that! Mine has come on gradually with just a bit when I layed down originally to being there all the time now it's like someones put a boiling hot needle down my outer thigh! Hope you feel better soon. Like Sher78 says get yourself to the Drs quick! Get something that works for that pain xx

  • Thankyou

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