first post help please.: hi everyone... - Fibromyalgia Acti...

Fibromyalgia Action UK

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first post help please.

Tibbby profile image
35 Replies

hi everyone and anyone first post to you lovely people. I have been diagnosed with condochondritis im not entirely convinced that this is the correct diagnosis. I have very tender ribs pain left side under the left breast, painful breastbone, clavicle shoulders and neck spine also. No headaches but often feel as though I’m having a heart attack or stroke. I’ve suffered from insomnia and overthinking since my viral infection in 2018. I’ve had a whole raft of blood tests and a chest x ray all came back normal. I have been admitted to a&e with chest pain/high blood pressure twice my blood pressure is normally fine and a ecg came back normal. I am never without pain in my neck/back and to be honest have turned into a bit of a hypochondriac. I walk 5 to 10 miles twice a week and try to be positive but at the back of my mind I assume I’m going to die pretty soon. I’ve lost 3 siblings and both my parents to cancer. I’ve got to the point where I think everything I do makes matters worse in my mind. Help 😞

35 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministrator

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

You only mention your costochondritis diagnosis - but I'm assuming that you also have fibromyalgia since you are here.

Your symptoms do sound like costochondritis (which is basically inflammation of the rib cage muscles) and for many people, it can feel like a heart attack and the pain can affect any area of the ribs /chest

It sounds like you may have some health anxiety too (understandable when you have lost so many family members to cancer) - perhaps speaking to your gp about your anxieties may help, or getting some counselling xxx

Tibbby profile image
Tibbby in reply to Hazel_Angelstar

Thank you for you kind words of advice. I find my gp remote and only interested in writing prescriptions. I would love to be able to discuss my fears with someone.

Hazel_Angelstar profile image
Hazel_AngelstarAdministrator in reply to Tibbby

Depending where you live, you may be able to self refer for NHS counselling, otherwise your gp can refer you. Your mental health is every bit as important as your physical health, and while yes medications can help with anxiety, talking about your fears and learning coping tools is often more beneficial.

Tibbby profile image
Tibbby in reply to Hazel_Angelstar

I live in Dorset I think I can self refer I will try this route. I need to do something I am sinking 🙁

skit profile image
skit

Hi Tibbby Welcome to the forum.I have had bouts of costochondrsis and you are on the money it ups anxiety and fear.

I did have a decent GP at the time & she assured me I was not going to die.

You are brave to air your situation and others can answer questions as that is what the forum is share and care.

Tibbby profile image
Tibbby in reply to skit

Thank you so much for helping me understand what is happening to me I am already feeling more hopeful realising I’m not the only one with these insane thoughts.

ScouserA profile image
ScouserA

Hi Tibbby sorry to hear you are having a hard time. I too have been diagnosed with costochondritis and it affects all my left side, under breast, neck and chest. It's sometimes unbearable. I have however been admitted to a+e for chest pain and all tests like yourself were normal. The docs are blaming the chest pain on acid from the stomach even though I don't feel like I have heartburn. Is this something you think you may have as I didn't know acid can cause chest pain.

Tibbby profile image
Tibbby in reply to ScouserA

good morning ScouserA thank you for making me see I’m not alone with this horrid condition. I’m beginning to realise that burying my head in the sand and trying to solider on is not working and everyone’s advice is very helpful. I now know I need to access some help.

Tibbby profile image
Tibbby in reply to Tibbby

Hi just seen your comment about the heartburn and yes I got told that and I don’t feel as though I have heartburn I did take the tablets for a little while but stopped as they did nothing.

ScouserA profile image
ScouserA in reply to Tibbby

Yes they've gave me some acid tablets I just take them of a night and the burning in my chest seems to have settled, they think I might have a hiatus hernia in the stomach. Hope you feel better soon be kind to yourself and take one day at a time.

dannyxox profile image
dannyxox

Good morning Tibby welcome to the group, I have got costochondoritis also like previous replys been to a&e and had all the tests done as I thought I was having heart attack the pain was that bad, my gp also referred me for mammogram as I had lump at the spot it was really sore it was the doctor at breast clinic that diagnosed me with costochondoritis. The lump was nothing she said it was linked x I have regular flare ups I do breathing exercises to relieve it a bit and i also apply hot water bottle to area that sometimes helps. You are not alone with the feelings you have like skit says doctor told me I wasn't going to die. It's just trying to learn to get through the pain when it starts as it is frightening. Sorry for going on take care x

Tibbby profile image
Tibbby in reply to dannyxox

Hi Dannyxox

Your story could be mine I am so happy to have found this forum it has helped greatly to be in contact with such understanding people who have been there. I feel more hopeful than I have for months.

dannyxox profile image
dannyxox in reply to Tibbby

This forum is great I dont tend to post much but I read new posts every morning and 9 out if 10 I've had some of the issues raised it's good to know um not going off my head lol. Gentle hugs take care x

MS_2019 profile image
MS_2019

hi Tibbby, I too suffer with costachondritis, it started down the center of my chest however has since moved to my left side, GP told me this is very common with fibromyalgia, I understand your pain and how frightening it can be at times, just try to relax and practice breathing exercises, very painful at first but it does help, I usually take pain killers to ease the pain, nothing else touches it, I also think your anxiety needs to be addressed as it just adds to the stress you are feeling, talk to your GP and see what they may offer/ advise, I tend to write everything down before speaking with the GP as I find I can get overwhelmed and tend to leave some of the important things slip, sending gentle hugs and I hope you feel better soon xx

Tibbby profile image
Tibbby in reply to MS_2019

Hi MS_2019 Thank you for reaching out and being so understanding, I am attached constantly to my hot water bottle 😵‍💫 you story has so helped I thought I was the only one affected like this and as no one I knew had every heard about this condition I sort of got the thought I had the wrong diagnosis. And of course imagined the worst. Part of this relates to my sister who died in 2019 she had been back and forth to the doctors for itchy skin they run a raft of tests and told it was allergies she was forever excluding various items from her life to see if that was the trigger. She was specifically told all her blood tests were fine, a fact that reassured us all they then decided she had appendicitis and scheduled her to have it removed on the day of the operation they informed her she had stage 4 cancer of the liver and had 6 months. She lived just 5. So understandably I am always worried that they have mis read or missed symptoms. Sorry to drone on x

Loobielu profile image
Loobielu

Hi Tibby, I've never heard of costachondritis but it sounds awful. The responses you got from your post were so lovely, kind and supportive they actually brought tears to my eyes at the kindness of the people on here. I have had CBT for anxiety though and it helped me so much to being able to talk about it. Best of luck with your next step. Gentle hugs X

Tibbby profile image
Tibbby in reply to Loobielu

Morning Loobielu

I also had never heard of the condition and my other half and friends haven’t and don’t understand the stress of constantly feeling like your about to have a heart attack or stroke. Everyone one here has been so helpful and informative with constructive ideas.

Annmarie09 profile image
Annmarie09

Hi maybe get checked for your gallbladder, I thought I had costochondritis put up with it because I thought fibro brought it on.

Finally got an ultrasound scan and showed it the gallbladder instead. Lots of stones and a badly looking gallbladder due to numerous attacks.

Had it removed all fine since.

Good luck xx

Tibbby profile image
Tibbby in reply to Annmarie09

Hi Annmarie09

Good advice I have had my gall bladder removed in 2019 after suffering for over 10 years but I have advised lots of people since to check it out. Like you no problems since. Thank you for your answer and hopefully it will help others xx

Greyt profile image
Greyt

Hi Tibby . Glad you have reached out to the forum. I have found it so useful to talk to others with various conditions and the wretched Fibromyalgia. I have recently been researching condochondritis.

I have pain under breast bone and just below my shoulder but it is on my right hand side . I notice the replies you have had have all said they have been experiencing left side pain. I do get a twinge on the left but nothing like the pain I suffer to the right .I find it is worse at night and interrupts my sleep.

Like you I have had an X-ray which has come back clear . I hope you will manage to self refer to talk to someone about your worries.

I am not sure what is going on with me but I have managed to get a “phone “ appointment with my doctor in two weeks to let him know how down I feel with this pain and the constant flare ups of Fibromyalgia and recently arthritis diagnosis in my feet 😞 walking is my saviour to ease my mind so Arthritis is a big blow to me.

Let us know how you go on and take care of yourself. Xxx

Tibbby profile image
Tibbby in reply to Greyt

Hi Greyt

Thank you for reading and responding and yes this forum is helping greatly as I was beginning to feel I was the only one with this condition. They always say it’s worse on the left side hence the feeling your having a heart attack, but I do get pain on the right also hope that helps. Walking is a godsend I agree and feel for you with your arthritis diagnosis keep safe xx

Greyt profile image
Greyt in reply to Tibbby

xx

Wongle1 profile image
Wongle1

hi I was diagnosed with intercostal neuralgia maybe it could be that

Tibbby profile image
Tibbby in reply to Wongle1

hi I’m going to look that up never heard of it thank you xx

Wongle1 profile image
Wongle1 in reply to Tibbby

yes it is painful I have it on the right side under my ribs sometimes it’s like a stabbing pain sometimes it feels like flutters but it comes and goes at the worst when I lived in Spain I had it for a whole year with the sharp stabbing pain all the time they put me on morphine patches it was horrendous then I had a reaction too the morphine now I am in England and it comes and goes but it really hurts when it starts hope this helps xx

Tibbby profile image
Tibbby in reply to Wongle1

hi wongle 1 thanks for your reply and making me realise I’m not the only one out there. That in its self has gone some way to helping. I’m going to get some counselling to address my anxiety hopefully that will help with my thoughts that every twinge is a heart attack.x

Pabba profile image
Pabba

Hi Tibby. Like you I worried that my FM diagnosis was correct. I'm 76, I've suffered for years. My wife of 54 years seemingly healthy suddenly had blood in her pee, Docs put her on antibiotics. In 6 months she died of kidney cancer. I worried that something like that could happen to me. I found a private company that specialises in MRI scans, I didn't need my GP's referral. I paid £1500 out of my savings to have a Full Body scan. Done inside one week and full results and all images and a full consultants report emailed to me and my GP. I'm an ex engineer so I could understand the images. Brain and all internal organs given the OK. So no Alzheimer's, liver, kidney's, gall bladder, spleen, colon, bowel, bladder all ok. My spine however not good. The report detailed degenerative osteoarthritis and bone spur growth in several areas causing some of the nerves that exit the centre of the spine to be squeezed and abraded. These nerves go all over the body. Some of these nerves serve the chest wall, some serve the heart and some the shoulders and arms. Now what follows is just my theory. When the brain perceives the protective covering of these nerves to be wearing it sends it's soldiers to fix the problem but, in their enthusiasm they attack the nerve perceiving it to be the enemy causing worse damage instead of fixing the problem. As everyone's physiology is different the symptoms present seemingly randomly. Rib cage intercostal muscle/tissue pain appears to be quite common amongst FM sufferers. Usually many years pass before you are given an FM diagnosis. This is because no blood test or ultrasound or x-ray is going to show it up. My sister has it, my Mum had it , I believe the condition is familial and down to a rogue gene. So my message to you is this. You need your mind putting at ease. If you can afford it and if you are brave enough, go get a full body MRI scan ( not CT scan) MRI is better image quality. But, if it does show a life threatening problem, then you will worry more BUT, you will then be armed with solid proof to show your GP and get the ball rolling quicker on treatment. What is most important to you, your life or that holiday on the Med. You're state of mind has a lot to do with your overall condition. Probably no consolation but, there are millions of us FM sufferers, please, Stay positive.

Tibbby profile image
Tibbby in reply to Pabba

Hi Pabba thank you for all the information and ideas I have thought to get a scan but also worry what would I do if it was bad news it is helpful to chat to everyone on here x

My daughter has costochondritis so I understand where you are coming from, she was also diagnosed with panic attacks and bipolar disorder ..... and she was only 15 ............ it will ease up over time , you just have to work hard to keep calm. We found that the rule of 3 worked brilliantly (3 things you can see, hear, touch, smell, taste) it helps focus your emotions/thoughts and leaves no room for overthinking. Hope you feel more in control soon x

Tibbby profile image
Tibbby in reply to Grandmawithwonkylegs

hi grandmawithwonkylegs. Thank you I will try your method I definitely need to get some stress reduced. Xx

Midori profile image
Midori

Hi Tibby,

It sounds like it really is Costochondritis. My son gets it badly.

I don't but I get other aches pains and gut problems as well as walking problems. Nearly all of mine is below my waist, except for the early arthritis in my hands.

Cheers, Midori

Tibbby profile image
Tibbby

Evening Midori thank you for your reassurance and I feel for you with your problems old age is certainly a challenge cx

Midori profile image
Midori in reply to Tibbby

Yep and I'm challenging it back as hard as I can! ;)

Cheers, Midori

Kariss profile image
Kariss

Hi Tibby. I too have costochondritis, and you have all my sympathy! I was diagnosed with this as part of fibromyalgia after suffering inflammatory arthritis for about twenty years now. My symptoms and experience are almost identical to those you describe. I have also been to A&E twice and been told the pain is inflammation between my rib muscles. Just like you I’ve had multiple ECG’s, blood tests; worn a heart rhythm Holter monitor on two occasions, and all proved clear. The pain I experience is across both ribs and diaphragm and usually settles in the left side. It feels like I am wearing a steel corset with added stabbing pains. When it finally subsides, the day after, I always feel extremely tired and like I’ve really been put through the mill! I often feel tender for up to week afterwards and find it almost impossible to wear a bra. I find heat the best therapy and rubbing the area or putting pressure on it helps too. I try to do deep breathing and use mindfulness techniques to get through it as it is always terrifying. If you can take them, painkillers such as co-codamol help a bit. There are also many meditation type music videos on YouTube for pain relief which can be quite helpful when it happens say at night, or if you are alone and feel scared by the pain. Worth giving them a try at least. Hope you get some relief from all this. Fibromyalgia is indeed a cruel condition!

Tibbby profile image
Tibbby in reply to Kariss

hi Kariss I can’t tell you how much all the information you have provided has helped. Just to know you are not alone and others know what it is like. My doctors have been very little help and seem to think that a handful of painkillers will sort it out. Almost 2 years down the line I feel I am drowning in fear and despair. What a helpline this forum is proving to be thank you so much. Take care of your self xx

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