My Costo and Tietze symptoms

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. 

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

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.

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!

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! 

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

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.

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  

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