Any advice at all?

[Wanheda242]

I honestly don’t even know if this is the right forum to post on, but my Doctor says that it’s Fibromyalgia causing this, so here I am.

I’m 20 years old, I have endometriosis, fibromyalgia, Gastroparisis, and Polycystic Kidney Disease.

I’m honestly just never... ‘well.’ I’m always sick every single day, I’m learning to deal with it I think. It’s incredibly difficult and painful, I’ve had to let go of basically all my dreams. All of my studying and work experience means nothing anymore thanks to my body literally just going completely against me I guess.

Anyways, sorry for the Vent there, whilst most of my symptoms are certainly dulled from the countless medications I’m on - I’m really, like really struggling with this one.

For reference, I’m on 40g of amitriptyline, codeine, fluoxetine, omeprazole, vitamin D tablets, morphine for the weeks I actually have my period as my endometriosis is very severe, Valium for when I can’t sleep due to the pain. I’ve tried alternative therapies, such as reiki, yoga, meditation, deep breathing. You name it, I’ve tried it.

The symptom I’m talking about is chest pain. I can’t stress enough, that it is NOT anxiety caused. I have anxiety, BPD, depression, and PTSD. I know what anxiety chest pains are, this is not the same.

It starts at my lowest rib on the left side, once it spreads to the right side it very very quickly travels up to every single one of my ribs. My lungs feel like they are on fire, I barely breathe when this happens, I take very small, shallow breaths but even these are all incredibly painful. I’ve been treated for pleurisy and had a ton of tests done, showing nothing. So, the doctors have decided to deem it a fibro symptom. Fine, I’m tired of arguing. But if it’s just a fibromyalgia symptom, how the hell do I treat this? It’s agonising, I’ve been crying all night because my lungs are literally so sore. Has anyone at all experienced this? Anyone have any tips at all?

[Painny]

Wow ...I loved reading your piece! So well written 👍

but I know it’s difficult having several conditions, especially being young. honestly I have given up and am not on any medication as the pain do not leave me alone. Every cell of my body experiences ache, an ache that nobody can see or touch 🙈

the only thing that keeps me seeing doctors is my curiosity about the condition not that I want to get any better because I know there is nothing out there and the medical profession is not interested in my condition...but because I am nosy to know about my defunct brain.

I suggest gentle walking everyday, recently I managed it up to 2 miles, if it’s rainy I walk around shopping malls. Obviously, I come home and then collapse. I don’t know...sometimes I can’t plan anything 🙃

I do wish you a better health x

[Sosbach]

Yes, inactivity combined with anxiety can cause this. Try gently stretching out your torso while hanging from a door frame, taking long, slow deep breaths. Also, that’s a whole heap of medication you are on. Have you thoroughly researched the possible side effects of all these meds, and just to conflate things, the meds in combination?

[Hidden]

Hello, did your dr. say it was costochondritis? I suffer from it every now and again. There are a few here with fibro who do. When I get it the pain is bad! I try to find a comfortable position, breath normally hope I don't a have to move to much and please no sneezing coughing or deep breaths. It hurts to move. Usually it lasts a few days. I already have pain meds but they barely touch it. Well hope this helps. Chris

[Midori]

My vote goes to costochondritis too. It's a long word which simply means pains in the muscles which connect your ribs, and is well known to many Fibro patients.

Hope you can get it under control soon.

Cheers Midori

[bookish in reply to Midori]

Hi, I know what you mean about where the pain feels, but it is actually the cartilage that is the problem not the muscles, so could be a mast cell issue. Cheers

[Midori in reply to bookish]

I don't think that is accurate, as Cartilage has no sensory nerves.

[bookish in reply to Midori]

Nonetheless "Costochondritis is a chest wall pain caused by inflammation of the costal cartilages or the area where the ribs meet the sternum, known as sternal articulations. It is a benign cause of chest pain. Patients often present with the chief complaint of chest pain; therefore, other causes of chest pain must be excluded with history, physical exam, and/or diagnostic testing prior to a diagnosis of costochondritis."

And mast cell degranulation produces tryptase which is cartilage degrading and inflammation producing.

[Morgan88K]

Costochondritis, after months of this found alot on the problem being mechanical your back seizing up putting pressure on your ribs causing it. Turmeric tea, more paracetamol less codeine based drugs made it worse, exercises to get back moving again working. Feel your pain it's horrible!!

[Broadfield]

I agree with Morgan, above, I have this issue plus anxiety, fibro, ME, PTSD, and other stuff going on but recently I was put on Duloxetine 20mgs twice a day plus Diclofenic as back up. It's made a world of difference, I can now walk the length of my garden and do very light exercise, stretches mainly. My pain has reduced to mainly my right side and I can cope with that most days. At night I listen to music if I'm having trouble sleeping, mostly I don't give a fig about what I can't do anymore and concentrate on what makes me happy. CBT was a big help as it focused my mind.

I sincerely hope you get some relief so you can enjoy life again 😊😊

[Bhal]

Hi wan I am sorry to read about your health. Doctors always say can not do anything other than medication. Sometimes medication does not help. Take some form of exercise even just stretches for 30 minutes or even less. It eases the pain for little while. My heart goes out fir you. Best wishes . Don’t give up. Be positive. It does help. I have been struggling for over 20 years but managed to work part time. Good luck!!

[Pinkvelvet]

Hi wanheda ,

So sorry to hear you're in so much pain and that such a young age as well,

I suffer from costochondritis and now been diagnosed with fibromyalgia,

I think you've got costochondritis as I suffer from bad chest pains and also in the ribs now I've been diagnosed with it,

it's streamly painful it sounds like you have have this I would go back to your doctor's and ask would it be costochondritis as it sounds like it to me anyway all the best take care x

[bookish]

Hi. So sorry that you are having all this to deal with. I think it would be worth looking into Mast Cell activation/dysfunction and Small Fibre Neuropathy.

Some people diagnosed with Fibro are believed to have SFN. There are many links between SFN, mast cells and dysautonomia (like gastroparesis), and mast cell activation can cause a large range of symptoms (associated by some with both endometriosis and polycystic kidney disease). There are also links to Sjogren's which is also systemic and affects lungs in most sufferers to some extent. Some here have mentioned costochondritis, which also may well be linked to mast cells. When mast cells break down (degranulate) they produce histamine, but other things too, one of which, tryptase, is a cartilage-degrading enzyme and raises inflammation. Costochondritis is an inflammatory disorder of cartilage. (Best place to start looking into SFN etc, if you wish to, is Dr Anne Louise Oaklander. Search Oaklander YouTube for 'Small Fibers, Big Pain (Radcliffe)).

(Incidentally, re anxiety and oestrogen levels/endo - a genetic SNP on the COMT enzyme can result in high neurotransmitters like adrenaline and dopamine which can make us more vulnerable to stress, more anxious, feel more pain (linked to Fibro) and also make us slower metabolising and getting rid of oestrogen. Imbalances between neurotransmitters and histamine from mast cells can also cause and exacerbate nerve pain). Mast cell reactions aren't all allergic, lots of other things can cause degranulation. Hope that helps a bit. Best wishes

[Mollycooper11]

As others have mentioned it could be costochondritis. Perhaps have a look online and see if it sounds the same.

I used to suffer from it all the time, I was on steroids and as soon as I started tapering down, it would be back. I've mentioned it on here before and apparently you can't get it in the UK butI take Joncia and that has stopped it in its tracks. Good luck x

[Cat-Lady20]

Hi

I was the same age as you when I started getting chest pains and it took years for them to figure out mine was fibromyalgia. I’m now 24 and we share having many medical conditions at a young age and I very much get the giving up your dreams when my physical health started declining I was in the last year of university and was dead set on becoming an actor. As hard as it is I realise I physically can’t do that anymore and I have cried so many times over the loss of what I thought I’d be doing and the life I thought I’d have and it’s taken me a lot of time to find a new path and a new purpose but getting used to the new crap life throws will take time. If your uncertain if it is Fibro and I see a few people in the comments say Costochondritis which I’ve had a few time I would get a second doctor’s opinion to rule that out a physical exam should tell if it’s that and that can definitely hurt like hell and I had a doctor tell me it was in my head so I got a second opinion on it.

Good luck and honestly reading your message really brought me back to conversations I’ve had with past doctors about chest pains being in my head from anxiety and you talking about giving up your dreams it was like reading something I would have wrote swap out some of you drugs and medical conditions and it’s scary how similar. You ever need to vent or ask anything don’t hesitate.

[Catatvet05]

Hi, what has else has your doctor done to support you? I was on some of the meds you mentioned: Amitriptyline is by far the worse drug I have ever tried; I gained weight, I felt even more depressed, I craved sweet food all the time, dry mouth, to name a few. I would recommend downloading an app called Medscape. It’s an app designed to give you all the details you need on medication, adverse effects, what not to mix drugs with other drugs, etc. Doctors won’t do this and therefore this will put you at a better place to support yourself with the knowledge. Amitriptyline shouldn’t be mixed with quite a few other drugs and if patients have types of diagnosis such as bipolar, this is definitely not allowed. I say this because a doctor recommended this drug to my sister who has bipolar; lucky she is very up to date with what she can and can’t take. What about diet? Have you thought about less wheat and more veg? That could help? What really annoys me about GP is that they don’t have the time or resources to really get to the core of the problem. What about homeopathy? My friend recommends this. This is maybe my next move if my current medication don’t work. All the best to you.