My post got deleted?!

[orchidcass]

Sorry jeffajaxsmith I didn't get to read your full reply. Someone's deleted my thread. Trying to reach out to others with a similar story and look what you get. Please private message me of possible

[Tee1008]

I'm afraid your post was really in the wrong place, orchidcass. Through no fault of your own, your post was in the middle of a load of spam posts and probably got deleted by mistake.

Please re-post.

Tee x

[PastMeBest]

Hi orchidcass if your post was about Rheumatoid Arthritis/COPD I remember reading it and nothing seemed untoward. Maybe it was deleted by accident as it was right in the middle of loads of spam.

If you get in touch with the administrators they may be able to restore it or at least give an explanation of why it was removed.

Regards. John

[mrsmummy]

Please read the PM I sent you.

[Hidden]

Unfortunate really was deleted : I had moment of clarity SO hard to come by these days but yer what I was saying is this lots with lung dieases with arthritis THAT gp's dismis as O just a tad of arthritis WHEN really lung dieases suffers should clarify with there GP's as RA, Arthritis.

Or in my case but can't remember what my GP said in passing I was suffering from osteoporosis or osteoarthritis THAT is very much part of any lung diseases.

[Nottobad in reply to Hidden]

I have COPD and psoriatic arthritis and also osteoarthritis The arthritis and COPD are treated differently. As I have COPD there is a limit to what the rheumy consultant can prescribe me.

[Hidden in reply to Nottobad]

Guess you lucky your being treated for it .. This lots of lung disease suffers unaware and and think it's part parcel of the condition.

Even tho is in some respect they including myself should be receiving treatment as Inflamation calcium deposits do effect lungs and make any lung disease worse THAT why suffers should clarify with gp's when the come out with these just a tad passing comments.

[orchidcass in reply to Nottobad]

Hi nottoobad (lol I sat that every time!) Nice to hear from you hun, sorry about your multiple conditions, I have a long list too and it seems once the lungs are involved it becomes very difficult to treat anything but the lungs just to keep us going. I was half expecting COPD diagnosis to be honest as I was a smoker for 25 years (wish I never had now of course) I've had minimal emphysema when I went in two years ago, which had diminished greatly after. There wasn't any mention of any showing this time, my o2 levels were very typical of copd though. It's not on my diagnosis list though. My brother has copd and mum emphysema and asthma and they are both currently looking at an RA diagnosis. I've told them both don't even try certain meds cos their lungs are already bad. I feel like I can recognise now the difference between my asthma and the ra lung. Asthma wheezes where the ra crackles, asthma is tight chested where the ra feels like a weight on my chest, the sharper pain in my lower right lobe is where there is a small collapse, it's building up to that on the left lower lobe now. It's been like this ages but really the hospital only get to see when I'm completely battered by an infection. Are you on oxygen at home?

[Nottobad in reply to orchidcass]

Hi orchidcass I was dx with COPD in 2006. I was one of the unlucky ones who got it through smoking. I used to only get an exaserbation in Feb and oct. for many years and I hardly ever used my blue inhaled in between exaserbation. In 2012 I was dx with OA. Then in May last year I was referred to rheumy clinic to see if it was just OA. As I was getting pain in all my joints my hands are the worst. The consultant checked my hands with an ultrasound machine and dx was psoriatic arthritis. Also psoriasis which i thought was just dry skin. About three years ago I started getting in fections after in fections and my breathing was bad. The consultant at the resp clinic did tests and found out I had a small showing of bronchiectasis too. And none of the inhalers or medication was helping me. He also found out I had a low immune. The part that fights infections So I am waiting to see a immunologist, to find out why. My breathing is a lot better at the moment and my o2 level is high but I still get breathless especially when I am outside. I am attending a PR class at the moment. I was put on new inhalers. But haven't had to use my rescue pack for about three months. I hope you get a proper diagnosis soon. Take care x

[orchidcass in reply to Hidden]

My doctors just put my lung issues down to asthma which I've had since childhood, in reality I believe my luck GA going downhill was the first real sign I had rheumatoid disease as my asthma had never been uncontrolled or severe in any way, when I was about 34 I started with severe chest symptoms and constant infections, I already had diagnoses such as "arthritis" and "IBS" and "carpal tunnel syndrome" then had a major 6 month illness with swollen gallbladder which was rotting and gluing itself into my liver, I think all of this time I should have been diagnosed with RA, the doctors at the hospital didn't want to go with the ra lung diagnosis again they wanted to simply blame the ra drugs for damaging my lungs, but I told them before my ct scan that it concerns me because my lung symptoms were always there, when I was on the ra drugs and when I wasn't. I have numerous write ups from appointments all of which I've mentioned my lungs not being right, I had a lung function test a month before I was admitted which hadn't showed much change in lung function and low and behold on ct scan it showed I was right. I usually am right about my own body, I'm not claiming I'm medically trained but I'm intelligent enough and been sick enough to make it my business to know about this stuff and I've been through so much medically that I feel very in tune with my body. I understand why they didn't want to go with that diagnosis, as it seems to be the least hopeful diagnosis one could get. But I do feel I don't have time to waste with them pussyfooting around about it. If that's what it is then let's get on with it. I know I have to wait for the next scan to really know where I stand but the fact is the ct scan whilst I was admitted showed a hell of a lot of damage....that's not all just gonna go away unfortunately...and believe me I can feel all the scarring/swelling in there like a balloon blowing up under my ribcage and an elephant sitting on top of it!

[Hidden in reply to orchidcass]

Lot doctors won't tell you how grim things are till the can't hide it no more.

Think it's this al part of civil society business I like to call it can't rob a bank factor as that's why I think don't say out.

Lot doctors would of dismissed ya RA thinking ya asthma drugs streriode have caused it.

When really the should of tried stoping whole body inflammation process calcium deposits laying down BUT your lung doctor would said bone's are not my job and bone doctor would said lungs not he's.

Rock and hard place BUT that's what we are up against OLD unjoined up way of thinking.

[orchidcass in reply to Hidden]

Couldn't agree more all I ever hear is it's not my department, might as well cut me up and send each piece to its specialists lol

[knitter]

Hi, I haven't got RA, but some of my fingers are arthritic and I have been suffering from lower back pain for months which is getting worse each day.

I think my surgery is sick of seeing me....they say the pain is muscular even though I have two compressed vertebra in my upper back...my bones are thin because of the steroids. All I have been given is painkillers....cocodamol which makes my breathing worse and ibuprofen gel....which has a warning not to be taken by asthmatics. One GP said I should be OK as she had only known one patient who had reacted to it....very reassuring.

I got so fed up I paid privately to see the physiotherapist who is attached to my health centre....she assessed me and said I needed an X-ray as she thinks the pain is bone related and she is writing to my GP. Now I have to wait three weeks to get the results. ...and she advised me to go to A and E if I suffered any numbness.

My daughter wants me to see a private doctor now...but I just hate the thought of the NHS becoming more of a divided institution...but the pain is driving me wild.

[Nottobad in reply to knitter]

Hi knitter sorry you are in so much pain. I can understand your pain. Have you not been referred to the rheumytolagy clinic. To get a proper diagnosis. I only found out I had psoriatic arthritis when the hand clinic referred me. After being treated by my GP for OA for a few years. I take cocodamol I am lucky they don't effect my breathing. I can't take ibuprofen because that dose effect my breathing I also take tablets to slow down the progression of the arthritis. X

[knitter in reply to Nottobad]

Thanks nottobad, I will have to wait for the results of the X-ray and blood test....I don't know what the blood test was for though.

I am just having a whingey day I guess...trying to put the washing in the machine, I bought a grabber thing to help. ...then trying to put it on the line. As for housework...enough said...I have a long handled sponge thing to clean the bath now, but can't use the over the bath shower.

I am just annoyed that I had to make a private appointment for physio before an X-ray was mentioned. She was very good and only charged me a fraction of her fee .

I saw the best GP in my practice as he was on duty in the drop in centre...I was lucky as he is usually booked up weeks on advance. Most patients know which doctor they prefer and which to try and avoid. He actually looked at me and not the computer and examined me thoroughly.

The staff in the local hospital were excellent too and only a few minutes wait...the NHS at its best there.

I hope you find some answers to your immune problem too....I know mine is compromised because of long term steroid use.

Take care

[orchidcass in reply to knitter]

It's ok to have a whiney day,we understand, can't be positive all the time when it hurts so much and it's so frustrating watching our lives pass us by whilst we wait on waiting lists and in waiting rooms xx

[orchidcass in reply to knitter]

Oh knitter I'm sorry hun, I have scoliosis of the spine alongside rheumatoid arthritis, it's not much fun when every movement hurts.

[katieoxo60]

High Orchidcass, I did read your original post wondered what all those weird posts round it were, but did not have time to answer or report spam. I have COPD plus arthritis of sorts they don't know whether it is RA/ Osteo/ Gout or more than one. I had arthritis before being diagnosed with COPD but I only see a GP for both illnesses. All are treated with drugs causing even more problems. Going to the Gym made the arthritis worse but helped the breathing. It seems there are no hard and fast rules for chronic illness treatment, expect that if it is really severe you may see a consultant. I think everything should be considered as intertwined as many illnesses or treatment cause other so called illnesses when infact they are all one thing due to our low resistance to illness I would guess. Hope this post is not off subject as I have been off for a few days so just tried to pick up the thread. xx

[orchidcass in reply to katieoxo60]

Hi Katie, sorry I missed this reply, thank you for getting back to me. I agree, I have a total of six autoimmune diseases and a few extra articular issues such as scoliosis of the spine. Each condition affects the others and if it doesn't you can bet the medication will affect a few too! I feel I need one doctor to oversee all my medical issues and fill in the gaps that each specialist says it's not their field. X

[katieoxo60 in reply to orchidcass]

I wholeheartedly agree with you, beleive in some places they are piloting nurse run clinics for some long term chronic illness. At our hospital we have general medical doctors who run crisis type clinics for many chronic illnesses. Guess there is no ideal solution as much is beyond the cost of a cash strapped system, and doctors are retiring or going elsewhere for better pay.x

[orchidcass]

I'm going to add the link again to my group, hopefully it won't get marked as spam. If anyone wishes to join or just wants to know more about the connected issues between Rheumatology and pulmonary diseases. I really felt it was something that needed a group as there are so many manifestations involved!

[mrsmummy in reply to orchidcass]

Unfortunately you cannot put the link up here. I understand from HU that you can send it via private message to anyone who requests it.

[orchidcass in reply to mrsmummy]

Oh ok, if anyone would like the link please feel free to add or message me sorry if I'm extra work mrsmummy and thanks for being kind enough to not ban me x

[Nottobad in reply to orchidcass]

Hi I would be interested in your group I have 2 autoimmune disorders as well as COPD and I get treated separately for both. I have also been told I have a low immune system and I am waiting to see an Immunologist. As autoimmune disorders are caused by an overactive immune system. Maybe you Could PM me. With any advice thank you. X