Any advice .. symptoms getting worse .. what next

[kes2008]

So I a little worried .. I have fibro and my symptoms that have got worse I’ve least 12 months .. shortness breath chest pain specially on activities such as walking dogs or at work on my feet 12 hours a day .. physical job .. fatigue . Swelling in areas specially over collar bone area pain between my shoulder blades worse when I lay down on a night in bed .. gland that come up and down daily depending on how active I get .. my Gp has been telling me the last 12 month it’s fibro related nothing to worry about .. my body is telling me different .. I paid privately for a consultant appt as my GP refused to refer me to mine .. she wants me to have a ct scan of lungs and be referred to respiratory.. I am over reacting or are these symptoms something to get checked out is my GP right .. in my head I am thinking it is lung cancer but not saying anything to my hubby or family No one to talk to over my worries .. any advice these symptoms anything related to lung problems

[Damon1864 Volunteer]

Hi Mrs and welcome to the site, I know you you are worrying but please try to stay positive. Wait untill you have had your scan, I think you may feel better if you at least told your husband, then you would have the support at home. Remember we are here for you so please never feel alone. Keep us updated on how you are doing and have a lovely day. Take care 😊 Bernadette xx xx 🌈

[sassy59]

Hello kes2008, I feel it’s a good thing to have a scan if only to put your mind at rest. You’re clearly very concerned but try not to worry. See what the scan shows.

Thinking of you. Xxx

[hypercat54]

Hi I would ask your doctor for a spirometry test (breathing test) which is a simple one and can be done inhouse. S/he should agree to this. I would also ask to be referred for a chest X-Ray too. The latter will show any mass on the lungs which could potentially show any lung problems. Doctors usually go this route first before possibly referring for a CT scan if the results are unclear.

There is a lung cancer site on here if you want to post there as well. It's called the Roy Castle site. Also have a look at the link.

nhs.uk/conditions/lung-canc...

[kes2008 in reply to hypercat54]

The problem I have is that my GP refuses to do anything which I why I had to pay private for a consultation cost me £300 for a recommended treatment plan but GP still not budging .. they are saying it’s all fibro related and I have see 2 (male) GP s ... I did speak to a lady GP who is going to refer me back to my rheumatologist but she said they may not see me as my fibro has been diagnosed back in 2014 I haven’t seen anyone since .. next step would change GP practices as can’t afford treatment plan private .. lost as to what to do next .

[hypercat54 in reply to kes2008]

Did they turn you down for a spirometry test?

[kes2008 in reply to hypercat54]

Yep didn’t do anything my cousins who’s hubby is a orthopaedic consultant said go private for a consult so I did .. he said the symptoms I am getting are not caused by fibro ... the consultant agrees she want that test doing and ct scan and bloods and Urine tests and referal to respiratory but they not doing it ☹️

[scorcher in reply to hypercat54]

I believe that spirometry tests are on hold at the moment because of the pandemic.

[Tia4209 in reply to kes2008]

Hi, how frustrating for you, can you speak to the practise manager and ask if you can change from your current GP to the lady GP , if she is more sympathetic and open to referring you to specialists. x

[Badbessie]

I have multiple problems including Three of the pain syndromes and COPD. At times it is very difficult to sort out which condition is causing the symptoms. Fibromyalgia as caused me many of the symptoms you mentioned combined with Costochondritis. However until your scan you will not be sure. Personally I would go for the scan to eliminate more serious problems.

[kes2008 in reply to Badbessie]

I was told it is prob costochondritis but never been diagnosed just another fibro thing GP says .. but pain between shoulder blades and shoulders and chest is getting worse specially on a night time .. when in bed .. all sorts going through my head . I have all there refusals in writing just in case anything happens so frustrating

[Badbessie in reply to kes2008]

Hi have had costocondritis on numerous occasions and I really feel for what you are going through. To say the least it can be very anxiety inducing. My GP and rheumatology consultant between then gave me every test possible and I was left with fibromyalgia/costocondritis. The real problem is that it can mimic so many other conditions from gastric to cardiac. Personally I would go back to my GP and discuss your need for a definitive diagnosis. When I first had the pains it made me very anxious which can make the symptoms worse. Sadly even with a diagnosis there is little anyone can do. The only things I find helpful are antiinflammatories, rest and a gentle heat to the affected areas.

[kes2008 in reply to Badbessie]

We know it’s not cardiac related because I originally went and saw a nice lady who ref me before lockdown for cardiac echocardiogram and they have said not heart related which is good .. but something is going on .. 🙈I’m not going mad

[Badbessie in reply to kes2008]

I first started getting symptoms of fibromyalgia five years ago. At times I thought I was going mad. Tests came back negative or the results did not explain the symptoms etc. Over the years I was diagnosed with complex regional pain syndrome, then later widespread chronic pain syndrome and finally fibromyalgia. Various doctors have given explanations for some of my pain in that my osteoarthritis could be the trigger for some of my problems but and it is a big but there is still much about fibromyalgia that is unknown and you may not get answers.

[stanns]

I have fibro too, and find it very difficult, so much pain, bad enough gasping for breath.

[kes2008]

So my cortisol levels re too high so more blood test .. just want answers as to why I feel so yuk constantly GP is no help .. having to source all this info and stuff myself anyone heard of this or have Cushing disease xx

[kes2008]

sos been a while update .. under investigation with endocrinologist and gyny have 2 suspicious cyst on right ovaries that need checking was a bit in shock when told i need a blood test to eliminate cancer because they looked odd the dr said. so waiting for that appt . feeling crap still . have changed jobs so that's helping a little not as physical. abdo pain constant with nausea and shortness breathe still got hardly any Appetite and when i do eat its little as then feel full quickly. so tired all the time but struggle to sleep. stressed a little and worried that after all this time my ovaries are the problem and that is what should have been removed back in 2017 when i had the hysterectomy like they were supposed to do but didn't. they left them behind for some odd reason.