My Costo and Tietze symptoms

Bones, joints and muscles
1

Hi everyone,

I wanted to share my story as I find it impossible to get any information specifically relating to what I have gone through. Im Nick, im 28 and here is my story. My hope is that some people out there sharing the same symptoms can breathe a bit easier knowing they are not the only ones

It started about 4-5 months ago with a persistent twitch in my chest. Didnt think much of it untill I started getting chest pains a week or so later. As with most people suffering from this condition I ended up in the emergency rooms thinking at was heart related. After tests such as chest x-rays, blood tests and an ecg I was given the all clear and told it was "a-typical" chest pains. This basically means your not about to die but we dont know whats wrong with you.

After a few days the pains hadnt subsided so I went to my GP. She too did not have an answer and put me on xefo rapid (an anti inflammatory) and cortisone thinking it was some form of inflammation. These meds did not help at all. It was only a few days later I ended up going back to the emergency rooms with heart palpitations and chest pains. Same tests and same results. This time however the doc on duty said I may have costochondritis. He took me off the cortisone immediately and changed my anti-inflammatory to Celebrex 200mg. (This I must say has helped to a certain extent).

The pain seemed to be subsiding untill about 2-3 weeks later (+- 1 month since first symptoms) I suddenly felt a bulge on my left ribs. The bulge/swelling is under my left pectoral and extends from my abs to my side. I naturally panicked and for the 3rd time ended up going to the ER thinking the worst. The doc had a feel around and after poking and prodding around said he did not think it was anything serious but just swelling caused by costochondritis.

I have condensed my story as to not write an essay, but I will list all my symptoms below. These symptoms come and go and some are more common than others. The swelling however has not changed or gotten better.

• Swelling - bulge on my left ribs from my sternum to under my arm on the side / soft bulge in front but hard (almost like cramping without the sensation of cramping) on the side. Swelling in my back on the right side.

•Muscle twitches throughout my body.

• Chest Pain - short stabbing pain in any area of my chest / long periods of pain in my sternum / sharp pains with breathing.

• Back pain - Mild compared to chest pain but similar symptoms.

• Heart palpitations - two or three times so far total.

• Pain when I sleep on my sides

• Abdoman pain - not common but extends into my stomach on the surface. Almost muscular in nature.

• Stess pain after eating too much - not very painful, but a dull pain when the ribs are expanded.

The Celebrex has helped as well as gentle stretching. I am seeing a specialist in 2 weeks to hopefully get some answers and direction as this is really getting me down. Its frustrating not knowing what has caused or how to fix it. The one thing that does help when the panick from the pains sets in is to just breathe and remember its not life threatening. Its annoying but you will be Ok.

Please share your stories with me and I will keep you all up to date with my progress.

Thanks

2

HI. I can really relate to all this it’s like you go to bed and wake up with all these different symptoms. The hardest part of this disease is it’s invisible to the outside world. I also get times when I feel I can’t swallow pains down my left arm my shoulder blades feel so tight like they’re being pulled together. I’m just waiting to see my rheumatologist but it’s so hard to get an appointment. I really feel for you and just hope we get some proper answers and help. 

3

Sorry you are going through so much.  I was diagnosed a few months ago after thinking I had a broken rib.  I have other issues that involve a rapid heartbeat so thought it was that.  I’m fortunate that I’m doing better now but from time to time I get a flare and then is subsides.  I’m very sore today, hurts to take a deep breath and I feel that I’ve been kicked in the ribs.  Hope you feel better soon

4

Hi Nick,

Thanks very much for your post. It is long, but so is my response; the detail demonstrates to me how concerned you are. So much of what you describe is what I've been going through for the past 13 months, i.e. under left rib pain, left chest pain, left back shoulder area and upper abdomen, and I truly empathise. Strangely my right side is hardly affected, just the occasional right side rib twinges. Like you I've had all the blood tests and scans (ultrasound, CT, MRI) available on the NHS, privately seen a Gastroentrology and Rheumatology consultants and have paid privately for a dozen sports massages and several chiropracty sessions.

Over the months I've tried many different painkillers. My GP first suggested Ibroprofen and Paracetamol, but has since prescribed Naproxen, prescription strength Co-codamol, Amylitripriline. Nothing has given me zero pain. The Backpod device has helped in relieving the pain. Changes in diet, e.g. anti-inflammatory, haven't really worked for me as well as things like Apple Cider vinegar, Cod Liver Oil, Glucosamine and Chondroitin supplements.

I'a 58 year old (with a young outlook) female, who until a year ago was fit and healthy ... a proper gym regular and always on the go. The Costochondritis came from nowhere, it just started as a niggling pain under my left rib and within weeks spread to other areas. Until my Costo was diagnosed I'd never even heard of the condition, and no one I know had either. Yet, through this forum, I know there are many fellow sufferers.

For the last couple of months I've stopped taking medication (except for High blood pressure tablets) or any supplements. I'm trying to give my body system a rest and to see how it does on its own. I'm beginning to think that it's just going to be a waiting game. Months ago my GP said to me "you will get better, we just don't know when" - I now think that this is indeed the case, and that to a certain extent this is correct regardless of what I do.

It's important to keep a good mindset, - if I begin to think "why me?" instead I think"why not me?" then I try to get on with things as best I can. I try to help myself by planning my day and setting mini targets (thankfully I retired at 56) and keep as busy as pains allow. I push myself to walk outdoors for at least an hour every day ( 2 x 30 min sessions), unfortunately, the gym is out of the question at the moment, and I do small daily stretching movements.

I'm still suffering after all these months, but I feel not as intensely, though pain is still there constantly, ranging from dull ache (which I can tolerate on a good day) to uncomfortable pain, but no longer agony if turning wrongly or reaching for things. Unfortunately, I can still only sleep on my back. Side sleeping just aggrevates everything.

If you haven't done this already I would suggest you keep a quick daily record of your Costo. It's only when I look back at my records that I can see that progress is being made, though it's painfully slow, literally! I can do more than I used to without creating pain flare ups from things as simple as chopping veg or reaching up for things, even just grabbing a towel from the shower rail in the past caused pain if I forgot about not foing side movements. I feel that half the battle is to KEEP POSITIVE and DISTRACTED, but don't beat yourself up if your body is telling you to rest.

Just writing this has been very cathartic for me, so thanks for the opportunity!

Wishing you a happy, healthier New Year.

C.C.

5

This sounds like me. I went to the ER with chest pain thinking heart attack. I had an EKG and x-ray of my chest, blood tests. They gave me acid reflux type meds that didn't help at all and a shot of tramadol which made my pain worsen. The next day I went to my GP she said gerd and costochondritis. It hurt to press on my breastbone and anywhere on my chest. I ended up in the ER again about a week later. I had two more ekgs a CT with contrast of my heart/lungs because of an elevated d dimer and they were checking for pulmonary embolism. I was sent home. I went for numerous tests. I had this pulling/twitching around my sternum and all of these painful little lumps. I had a mammogram and ultrasound of the breasts and was told it's not cancer. I had a stress test and two more EKGs and told my heart is functioning. I don't have the problems breathing in I just get random stabbing pain in my chest and in my ribs. Mine goes up to my collarbones on both sides but seems to affect the right side more often. I also have little bumps around the ribs and some swelling. I can't take anti inflammatory drugs because my doc also thinks I have an ulcer so I've been dealing with this with just Tylenol. When I think the pain is gone it comes back out of nowhere!

6

Nick,

These symptoms sound exactly like me apart from the swelling. 

I also ended up in hospital thinking it was heart related and had all the tests etc. 

It has now been 3 months and I’m still getting pain, can go from constant to very mild, I seen to be much better when I manage to take my mind off it. 

I’m not sleeping all that well, but gradually get to sleep in the end but going to work is a thought. 

The muscle twitching all over the body is very irritating. I seem to get sharp pain from around about my nipple down to the bottom of my ribs. I sometimes get stomach pain also, which varys in location daily. 

It’s satisfying to know I’m not the only person going through this as it has beaten me up over the last 3 months. I’m trying to be much more positive about everything and hopefully now on the mend! 

Let us know how your next specialist meeting goes! 

7

Hello, I am reposting;

The posts on this site are very interesting and of support too. This condition is very baffling and extremly worrying whilst experiencing and trying to lead 'a normal life'.

The collection of presenting effects appear to be interchangable and evolving which is quite exhausting. The list provided above is comprehensive but I sure not exhaustive. Thank you for sharing by the way. A fellow suffer described very detail a mirror of the symptoms i had been experiencing;

Dizziness

Head pressure on the side of inflammation (regular for me to date)

(possibly led to a slowing down of the movement in left eye, I now wear glasses to refocus, never had eye issues before)

Headaches

Swollen neck (painful)

Tightness in neck - (my lymph on effected side has been up for 2 weeks)

Swollen shoulder muscles

Back pain in the middle of back

Inability to eat (I have lost weight since having Costo)

Loss of appetite

neausa

Burning sensation in muscles

Tingling sensation in muscles

Strange sinking feeling when breathing, comparable to the stomach drop you get in fear/on a rollercoaster or similar but it's more muscular/physical

Sensation of muscles suddenly "deflating" when falling asleep - possibly anxiety related as well

Constant palpitations

Fatigue

Tiredness

Generally weak

Arm pain on side of inflammation (upper left forearm feels fibrous and kumpy sometimes painful)

Feeling like I can't breathe ( also connected anxiety related)

Difficulty walking at speed - who knew swaying arms could be so painful?!

Feeling fine all day but swelling up when you lie down to sleep

I belive I've been suffering with this now since August 17 and feel it has been a slow journey in getting my gp and nhs services to refer and move me along to a specialist to date.

Like most posts the feeling of anixety has been for me chronic and distressing as especially as I have a 9 year daughter who sees the change in me and is upset by this.

Tumeric tea is something Ive just started taking but I dont enjoy painkillers..... I have found out about the backpod and intend purchasing soon and have been prescribed Amatripyline.... worried about taking but will try.

Where do I go from here fellow suffers........

Best regards

8

CC

Just read your post.

I would like to be proactive a possible and am interested in whether you found any benifits with

sports massages and several chiropracty sessions?

i really am adverse to having to take painkillers Ibroprofen and Paracetamol and did not like Naproxen, prescription or Co-codamol,

I recently been prescribed Amylitripriline but worried about side effects. And anticipate nothing will completely eradicate pain.

Please could you let me know your successes with using the Backpod device as I do plan to purchase would you say Backpod vs Chiropractor ?

Im dishearted to hear you non successes with an anti-inflammatory approach. Vitamin D and Cod Liver Oil I am taking currently and will start using Glucosamine and Chondroitin supplements.

6 months in this is an uphill battle...

Best

Elaine

9

I also have the arm and neck pain. I have pressure in the right side of my head and have had dizziness on numerous occasions. Sometimes it feels like my ear/hearing on the right side is also effected. I have lost about 40 pounds and am just getting my appetite back. I'm not sure if it's this or just the constant worry that the doctors or tests are missing something. I wasn't sleeping for weeks because of the constant worry. I am starting to sleep a little now due to being on an anxiety med. I was also prescribe amitriptyline which I didn't take. Now I take Lexapro and my doc set up physical therapy for my neck.

10

Hi Nick. Your story like others sounds very familiar. Have you been to an immunologist? have you had specific bloodwork for auto immune diseases? not to scare you, because Im sure they will come out normal like mine. Have you had a full body CT scan with contrast? again to rule out anything like tumors or just something thats not supposed to be there. All my tests came out normal Thank God! But my Dr. did find I have Fibra Myalgia. I addition to Costrocondritis. Also ended up with Inappropriate Sinus Taccacardia..also not life threatening. My PCP is amazing and decided after several months the best thing to do was send me to several specialists and do tests to rule out the bad things and we did!!!

Costro is painful, but most Drs say it should not last more than a few weeks. Arnica gel, tylenol, soft ice packs, Heating pad, Pain patches with lidocaine all might help you.  Good luck. I hope this helps. Hang in there. You will be well smile smile smile smile 

11

My symptoms are almost identical to yours and is so frustrating. 

12

Grace, did the full body CT scan scare you with all of the radiation? My entire family has fibromyalgia so I would hate to get a scan to tell me that. My family also has a history of cancer. The chest CT I already had scares me enough.

13

Hi Elaine,

Thanks for your message. Like you at first I was and still am very reluctant to take any sory of painkillers. I just had to give in in the end because the pain was at first so unbearable. Now I look back over the last 13 months I think that in the early months I was just so scared about what was wrong with me (I suspected cancer or heart problems too) because I'd never had any major illness, that the anxiety and lack of sleep made the pains even worse. Now I've had all sorts of tests my mind is more settled and I'm sleeping better, and I feel that this has probably helped a lot.

I can only speak about my personal experiences regarding Chiropracty vs Backpod. About 8 months ago I visited a very reputable Chiropractor, who my GP knew. He determined that my Costo was Tietzes syndrome and did moves on my back and some rib massage and because I had so much pain he put some acupunctute needles in my back too. He said he couldn't treat the sternum because there was too much inflammation. On the next visit, he repeated the treatment and did some moves on the sternum. A day later I was in so much pain and my blood pressure went extremely high that I went to my GP who immediately sent me to A&E for heart checks. A ll tests came back normal. I haven't returned to the Chiropractor because he said until the pains died down there was little he could do.

Regarding sports massage. I visited one that my GP uses so felt in safe hands. I felt that this did help a lot. He found lots of little 'knots' over my abdominal area and upper chest and that my left shoulder was 'like a piece of frozen meat' i.e. very tight.

Regarding the Backpod, I too was sceptical, as anyone might be about what is seemingly just an expensive. lump of green foam and plastic. Anyway, I thought for the cost of a couple of Chiro sessions that I'd give it a go. I was very easy when I first started to use it. I started using it with three pillows and worked down to zero over a period of about 6 weeks. I didn't try to rush things, as tempting as it might have been to do so. Where I feel it differs from Chiropracty is that it gives you control over what your body is doing. If you feel a move is too extreme you can stop. I really look forward to using it and feel it has helped. Plus the support given by its inventor, Steve August, is remarkable. He has answered my questions both before and after use in great detail - a great guy!

Regarding Amitriptiline. I was prescribed this months ago and told that even if I experienced side effects that I should stick with it for few weeks before it might kick-in. I took it for 3 weeks and had to give in on taking it as the pains in my chest, abdomen and shoulders became excruciating. Personally I would not want to try it again. Same for Naproxen. But we are all different. When you are desperate I'm sure you'll give anything a go!

As I said in a previous post I'm now going 'cold turkey' and trying to give my system a total rest from tablets, supplements and treatments. I want to see where my body is at without interference. I'm just doing daily walks (1hr, 2x30mins) around the block, light stretches and generally distracting myself. I don't feel any worse for this and am sleeping much better. It's all trial and error!

Please contact me again if you feel that I can answer any more of your questions.

Best regards, C.C.

14

I have the little lumps too. Did they say what they are or are caused by?

15

I have alot of the same symptoms and also have ear and jaw pain in my right side. I was also dizzy and felt disoriented at its worst, been threw all the testing for heart and found that rest and going to the cranial therapist helped I know the inflammation is still there and have still had a few spikes in heart rate and BP but going way better just about back to my full work again. I feel from what I ve experienced and and what I've read on here is this is a condition that's going to come and go with stress etc so good luck to everyone that is dealing with this and enjoy our good days

16

I also have the neck/throat pain up to my ear left side though does it feel like a burning cooling sensation?

17

yes it was a full body ct scan to rule out any tumors, growths, cancer etc. It gave me peace of mind. I was thrilled to find out all the serious was ruled out. I hope your feeling better.

18

No it's a throbbing pain they thought it was from my teeth so they sent me to the dentist for a panoramic scan which was clearance the ear feels like a ear infection but no infection so weird

19

Hi there!

Was hoping I could get some answers as to whether this is going to be an ongoing thing for me. Last year I had really bad chest pain that spread to my right arm, went to the doctor and he right away said it was probably Costo/Tietze but I’ve read online that they are different? Anyway the pain went away after a few weeks and ibuprofen like he said it would but now I’m feeling similar(not as bad) tightness in my chest and pain in the left arm this time. I’m 23 and while I used to be more active before my first bout of this, I’m still healthy and get sufficient exercise. I remember when I was 17 getting a really bad pain on the side of my chest under my right breast but my mother, an RN, told me it could be a pleurisy and to lay off the smoking. I did, it went away and no real concerning chest pains until last year. I still smoke here and there but not nearly as much and am wondering if this could be a trigger? Or if I should head back to the doc and have further tests done. I see some people have had heart palpitations which I sometimes get too but never accompanied w this pain and just chucked it up the being born w an abnormal heart beat. Should I be keeping more an eye on this?

20

I can totally relate to almost every one of your symptoms. Mine started after having my second baby. I got up to feed her in the middle of the night and thought I was having a heart attack.   After that I had a few other’s initially and to date it has been a year without any major flare ups! I am able to live a normal life in every way except I cannot sleep on my sides.

Anyway...  I spent hours surfing he web for ways to cure this awful condition. In the past year I have found stretching, working out to strengthen the muscles around the area, keeping hydrated, occasional chiropractor and keeping my essential oils on hand have been the key to maintaining comfort for me. I cannot even tell you what a difference the essential oils have made. They work so fast, so I don’t have to use them daily but whenever I feel even the slightest tightness or hint of a flare up coming I immediately put Cypress essential oil on my chest and layer with Deep Blue Rub from Doterra. 

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