Treatment at a stand still

[Mellypad]

Went to my doctor the other day to explain that I can't continue the way things are going. I feel like crap most days and struggle after a busy week. I have asked you guys before if you have the same symptoms with mild bronchiectasis and asthma and a good few of you agreed. After 7 yrs she goes are we going down the wrong road. She seems to think me being breathless and in pain around the ribs, chest and back of lungs is due to fibromyalgia. Have medication for this in the past and did me no good, seen a rheumatologist in the past, after waiting 18 mths and she did nothing.

I am only in pain if my chest is under pressure, usually after exercise, stress, or if I was lifting, painting, cleaning etc. I am 42 yrs of age, and struggle on a daily basis and am very breathless a lot of the time. I am the strongest of medication for my asthma and they will do no more I don't get it. I have tried changing my inhalers but am worse. And as I explained to my GP I wouldn't be capable of doing anything without them nevermind trying to work and run a house with two boys. The only time I felt great was on steroids. I want to do an asthma trial, but I have to change my specialist so I am in limbo with that, and with no specialist at present. My GP is useless to me, so I am at a dead end.

They don't seem to understand how much this is affecting my life, and at this stage I don't know where to turn to. I would even be tempted to travel to the UK for a third opinion at this stage, it's been going on so long. Anyone got any advice they can offer??

Why can't they believe that I am breathless and in pain from my lungs, I know my lung function is good, but not everyone is a text book case.

[Angel1049]

Hi Mellypad, I use the nebulizer. As it turned out I got the relief I needed. Any meds I put in the nebulizer ...work twice as fast as any inhaler. Incredible! Also I try, Mucinex 1200 milligrams 12 hour tablet. (Clears mucus) Tylenol for severe nasal congestion, works on all congestion. 🙋🏼

Stay well!

[Mellypad in reply to Angel1049]

Thanks for reply, unfortunately they won't give me one, and at the moment I was tild my chest is clear.

[Boeta]

It is clear to me that you are in great pain and that your frustration level is running high...may I suggest a change of medical team and consider a visit to the UK for another opinion...at you age, where the body is still strong you need to take the opportunity to explore all your options....believe me, there is a lot excellent scientists and doctors out there, you only need to find them...

Yes, your body is very intelligent and it knows exactly what to do, but we never give it a chance...I am also out of breath most of the time...have you considered all your options? Never give up! After 8 years of this I am still venturing out to find relieve...sometimes i do and sometimes I don't, but the most important part is that i am willing to try...it does not mean though, that you should use any drug because someone in authority says you should...do share with others on this site...there is always hope and love...i am sending all my light and energy of good intention to you !

[Mellypad in reply to Boeta]

Thank you for your reply, yes very frustrated. Not in pain all the time, but it does stop me from doing things that i should be able to do. And at this stage i feel the doctors are giving up. Started cbd oil to see if that will help.

[Gladwyn in reply to Mellypad]

Hi Mellypad, I'm so sorry you are having such a difficult and frustrating time. The best thing to do in my opinion is follow Boetas advice and change your Dr. Which country are you in? Would it be easy for you to get to the uk? I hope you find someone you will diagnose your problem.

[Mellypad in reply to Gladwyn]

Hi Gladwyn i am in Ireland, yes i would go to the UK if i hsd too. At present im hoping to go back to my old specialist and see after that. Im frustrated cause the doctor is looking for an illness that i don't think i have as they can't understand my symptoms. I know its my chest, and saying it years. Do hard to get them to listen.

[cofdrop-UK in reply to Mellypad]

Where abouts in Ireland are you? I have found a cf specialist in Dublin. Please pm if you wish as I will not be allowed to put names up on the general site.

Cx

[Mellypad in reply to cofdrop-UK]

Pm sent.

[cofdrop-UK in reply to Mellypad]

Thanks - hope it was of some help.

Cx

[Gladwyn in reply to Mellypad]

Your poor soul the frustration must be driving you nuts and certainly not helping your condition. What do you think it might be? Have you read a post with symptoms very similar to yours? Maybe you could say to the Dr ' I think I have.... ' and see if he will investigate . 💐💐😂

[Mellypad in reply to Gladwyn]

Definitely asthma and bronchiectasis, but doctor is trying to say fibromyalgia too. I dont think it's fibromyalgia, just all from my lungs. I know there are people with difficult asthma, and think they need to investigate this.

[Hidden in reply to Mellypad]

I believe fibro requires pain below the waist Right? I hope you get to feeling better. I have severe back pain myself. Currently just got out of an epsom salt bath and have a heating pad on

[Shellc in reply to Mellypad]

You may find cbd helps but only if strong enough , I have both bronch and asthma and used to get lots of pains , I cut out wheat and sugar and try not to have any process foods , also take High vitamin d with k2 mk7 , I also take magnesium, I’m in seretde 250 and spiriva , phyllocontin, and maintenance dose of pred 5mg which I’m trying to come off, can u not ask to see hospital specialist

[Mellypad in reply to Shellc]

Thanks for that, good to know I'm not the only one in pain. Started on 10% cbd, and just two drops twice a day. Also taking magnesium at the moment. Gave up alcohol for November, and trying to change diet. Did give uo wheat, dairy and all that before might try it again. Had specialist but trying to change to a different one so i can do asthma trials, but seem to be an issue. Im on 250g steride four puffs a day, and two puffs of spiriva. Was on antibiotics all last winter, but didnt start them this winter. Pains are mainly in the winter time, thinj its the damp irish weather.

[Dids49 in reply to Mellypad]

If you feel any benefit from the cbd oil please could you update us as I have been told to try it by several people. Do hope you can soon get the help that you are so obviously in need of. Take care

[Mellypad in reply to Dids49]

Hi I will of course, I am only on it about a week or so, but at this stage feel it can't do any harm.

[Dids49 in reply to Mellypad]

Thank you, I am desperate and will try anything. I will be silly and live in hope of hearing from you that it is a miracle 'cure all'. I do hope it will help you.

[Hidden]

Thinking of you, not much advice to offer but to keep on asking for help and find the right answers xx

Fran

[Hidden in reply to Hidden]

By the way, have your cortisol levels checked, if you felt great on steroids could be adrenal glands insufficiency like me...

[Mellypad in reply to Hidden]

I think they did, but might ask them again. What kind of symptoms do you have with that. A nutritions that i knew used to say that to me, but doctors don't seem to think that way. How did you get diagnosed.

[Hidden in reply to Mellypad]

Like fibromyalgia.. very tired and was aching..

[Hidden in reply to Hidden]

You need a blood test first thing to see if your cortisol is low. If it is they send you for the Synacthen test where they do a blood test, test your cortisol, inject this product and test again 30mn later. The endocrinologist will monitor your results.

[Mellypad in reply to Hidden]

no never had test like that done, will discuss with the doctor on next visit

[Hidden in reply to Mellypad]

Ok

[Mellypad in reply to Hidden]

Thank you for the advise!!

[Mellypad in reply to Hidden]

I'll keep plodding along and trying to get answers. Just feel so alone as there is no one that understands what im going through on a daily basis. But hopefully something will turn up.

[Hidden in reply to Mellypad]

We are here!! Phone the helpline as well for advice if you need to.

I know how you feel, took me ages to get diagnosed..keep on asking for solutions 🌸🤗

[Mellypad in reply to Hidden]

Can I ring the UK helpline if I am in Ireland, I have the Asthma Society who I find quite good.

[Hidden in reply to Mellypad]

Sure I use Asthma Uk even abroad.

[Whitechinchilla]

How awful for you. I don’t have the knowledge to advise you but want to send good wishes to you in your search. Don’t give up, keep asking questions, the answer must be “ out there” somewhere.

[Mellypad]

They did a few years ago and all negative.

[Mellypad]

Thank you, that means alot to me.

[Neville33]

Do you have s pulmonary Dr...GP’s can only help so much...CT scan to see if u have picked up anything else...sputum test as well🙏🏻🙏🏻

[Matteo5]

Oh my goodness when I read this I thought perhaps my long suffering family had written this on my behalf !! I amm sorry to hear you are feeling so unwell and I can and do sympathise with how you feel

Iv never wanted to join any group but came across this group after finally being diagnosed with a few things 2 of these you have mentioned ? Our frustration is this has taken so long, inconsistencies when going to clinic for appointments not seeing the same person twice so frustrating having to go over everything again and again mines is also not a text book case no

Matter how many times I explain how much this has impacted in my life I 24 months ago I was doing aqua aerobics running my own business and actively involved in looking after our grandchildren with childcare when needed now apart from the medical side rmthe dicual side is just as important if not more so but trying to get someone to listen at clinic is another story and that’s where I will close because that’s the problem they won’t listen because it’s not text book Pkease forgive the lengthy note

I am and will always be a very positive person I will not let these illnesses define me but they NEED to listen to people

[Ksb6420]

Not sure if you are having the same pain as I did so I will explain. I had pain that started on my right side right below the breast that continued to my back. When it got real bad it was like someone hugging me from the back real hard, like a bear hug. I have had this for years but the last year it got really bad, like you I thought it was because of my lungs. My family doctor did a ct scan showing a difference in my gallbladder. After several more test from a specialist I was told I needed to have my gallbladder removed. Pain is gone!!!!