Please help me

Posted , 7 users are following.

I was diagnosed with tietze syndrome in February 2015. I haven't gone a single minute where I have not been in pain since, not one minute. I now have a 4 month old baby and this is ruining my life. I am a first time mum and I can no longer pick my baby up, I can't get down to the floor to play with him, I can't feed him properly, I cant push his pram, I can't take him out alone, I can't enjoy him without wincing. I am in tears daily. He sleeps, yet I am awake the majority of the night crying in pain or getting in and out of the bath, or going up and down the stairs filling hot water bottles and taking pointless tablets. I have to wake my husband up every time because I can't get myself out of bed. I can't turn over, I can't get up from any position that involves my arms. I have to hold my breasts as tightly as I can to my chest when I change because the pain that shoots through without a bra is unexplainable, I can't brush or wash my own hair or get dressed on my own without being in agony. I have had a baby and I would rather give birth over and over again than feel like this. I am angry at everyone, I'm then angry at myself for being angry at everyone. I'm 26 and I can't live the rest of my life in pain, I just won't accept it. I need to give my baby the best life I can, and this is ruining everything. I've tried naproxen, diclofenic, ibuprofen, codiene, amptriptyline, normal/dissolvable paracetamol, co codomol, hot water bottles, ice packs, heat pads, baths, Epsom salts. I've had numerous tests but only Following a full body nuclear scan, my sternum showed up completely black, indicating inflammation, therefore I have been given intermuscular depo medrone injection... I was so hopeful that this would work and it hasnt, things are as bad as ever. I'm sorry for the rant but I'm at my wits end and feel so disappointed that the injection has failed. I've had to change my whole life which I could cope with if it was just me but when my little baby needs his mum, I can't be there for him like I want to be. I'm so sorry for the dramatic message, I just really need some advice/some success stories/some guidance on where to turn next please

0 likes, 7 replies

7 Replies

  • Posted

    Hi Sarah. I know own how you feel. It's hard. For awhile I couldn't play with my kids, hold my kids in my arms. I feel your pain physically and emotion ally. I have had this since 2012. I was told that it would last month's to years to recover. 5 years later I still have it. Here are a couple of things I can offer as advice. And it does work..well for me but I hope it helps. 1. Stress....more than likely this has caused my pain to come back or make it worst. Being a single mom is hard but try to take things slow and don't make things get to you. 2. I take Aleve or take an any anti flamatory OTC or try to get a doctor to prescribe something stronger. 3. I will have a couple of alcohol beverages. 2 seems to be the magic number for me. But please drive responsible. 3. Stretch...this helps me at times. If your stressed out stretch as your muscles will tend to tighten up. I hope this helps let me know.

  • Posted

    Hang in there please . It's such a long story for all us. So basically

    I beeen suffering like 3 years on and off . All I can say is I am praying this away . Basically

    I have had numerous test and my

    Last stop was the rheumatologist this past Monday . The doctor acted he my

    Symptoms were strange

    . Give me a break . So many

    Ppl on this forum alone have the same exact symptoms as myself so how could he not have a clue ? Fast forward he sent me for blood test to see if I have markers for inflammation . He also tested for Lyme disease , and Uric acid . Now

    I already have been tested for lupus and rheumatoid factor and thankfully the lupus wasn't negative . So at this point I am praying and hoping and trying to. Believe that

    This will go away. Ppl who don't have this have no clue . It causes anxiety and depression because you know a day when you once felt

    " normal " and healthy

    . Please do not despair . You have the baby to care for. . Look into herbal remedies . Eat anti inflammatory foods . Pray! Sit in bath

    With Epsom salts . And go. Sorry so long but you really needed to hear back from someone . Best wishes .

  • Posted

    Sorry for the typos . I am typing fast. I meant to say thankfully

    I tested negative for lupus. But I also meant to say try to eat healthy , research herbal alternatives to pain management , and stress makes this worse . So you must relax . Lastly , hearing pass work well for me at times . Be well !

  • Posted

    I think to be able to let your feelings out is so important....so no apologies. It sounds as if you have tried everything to deal with this.....it is hellish.....my take on it is, if this is what it ok how do I make it work. First of all I decided for myself there was no point being angry, it makes it worse and it does not magically make it go away. I had bought himalayan salt lamps, purely because I had heard they help depression(I have this) and are good for the atmosphere. I maintain they have helped me deal with the mental impact of Costo. My anxiety and stress levels have fallen. You could check it out. I also started looking at eating anti-inflammatory foods a tea made with ginger slices, tsp tumeric, 2tsps honey, seems to help. Gentle stretching, exercises can be found online. Your picture in your head of motherhood is like any mother, you want to be the best and you can beĀ  ....ditch the anger. This might be you for a while, try and find ways that help you relax, sauna, music........
  • Posted

    Sarah as you can see from this forum there a lot more people with Tietze and it is worst than Costo.  I started getting the inflammation lump on my sternum 4yrs ago then the inflammation moved to my ribs, on both sides.  Then the spasms started about 2yrs ago and that is VERY painful.  I say it feels like having a charlie horse in the calf of your leg but it starts on my left side ribs and moves to the front near the sternum and also in the back ribs.  There is no relief until until the spasm is over but then your left with some very sore ribs.  Just picking up my arm is trigger a spasm.  The more physical I am the more spasms I get.  Wearing a bra makes the lump hurt like hell because the lump is right under the band in the front.  If I get cold and tense up I get a spasm.  Anything that requires me to move my arms or chest or just makes me tense up keeps that all of that area inflammed.  I have also tried all kinds of meds but nothing helps.  I just had a intercostal nerve block done on the left ribs in my back, where the nerve branch out.  It did work for 1 week.  It was great as far as not feeling the spasms.  But I did have spasms on the right side.  I still felt muscle and joint pain.  The doctor said they could do this injection again, that will be 8 injection sides, or try to burn the nerves.  I go back in 2 weeks to talk about it.  I cannot find a doctor in my area that knows much of anything about Costo or Tietze.  I've been going to pain clinic about 130 miles 1 way.  They know a lot more than my doctor.  Also try not to eat up too many anti-inflammatories.  It will hurt your stomach, kidneys and liver.  They are not good for you at all!!!!  I have Chronic Kidney Disease and long history of stomach ulcers so I can't take any of those drugs anyway.  Hang in there woman!!!  Don't be afraid to take some meds for your anxiety it does help. 

  • Posted

    Hi Sarah

    I'm so sorry to hear your problems. I've just been diagnosed with costochondritis aswell. Mine came on just before xmas and im on my 6th week. I also have had no relief from this awful illness. The only relief I get is 30 mg of codeine every 4 hours and amatryptilian at night. I take lanzaprol and lax and naproxen morning and night. Many hot water bottles and many hot baths each day. I bought a tens machine which I don't think has helped really. I've also had 2 chiropractor sessions and 1 acupuncture session. I'm still in bed all day almost and if the pills don't overlap I'm in serious trouble. God knows how you cope with a baby. Hats off to you lady, I can hardly feed the dogs. Luckily my hubs a star but he's bored of my complaining now and the expense of this very expensive illness. I'm 41 and never been ill before. I had no children so my life before this was relatively stress free. I do work full time (or should I say I did)and it is a very active job, that can be stressful sometimes. I do hope this reply helps you In some way ?

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