Breathlessness and Fatigue

judyw5

Hi There,
I am getting bouts of bad fatigue (particularly this week as I was away from home for a few days last week) but what concerns me at the moment is the breathlessness I experience whenever I go up the stairs or even walk on the flat. I have also been wheezing when I wake in the morning or after a nap and this has been going on for a couple of months. I have never experienced this wheezing before as I have never has asthma or broncial trouble. What I want to ask is whether the breathing difficulties are just to do with the fatigue or whether there is likely to be some problem with my lungs.

Thanks

stickywicket

Fatigue is part and parcel of an auto-immune arthritis but breathlessness is not and shouldn't be ignored.

Do you have asthma. Judy? My childhood asthma stopped by the time I was about 8 but returned in my late 40s when I started ibuprophen. I stopped the latter but still have to use an inhaler.

However, yours might be due to something else entirely. Please see your GP about it.

juliep123

Ask your GP to check your iron levels - anaemia can cause breathlessness. Anaemia can also increase your fatigue. Its definitely worth getting everything checked out.
Julie xx

dreamdaisy

Having wheezed my way through childhood I reckon this is a lung-associated trouble rather than fatigue. You say it's been going on for a couple of months so it may be best to make an appointment with your GP to see if he can ascertain what's going on. Asthma can occur at any age, it could be side-effect of medication, it could be something else but it's time for medical intervention. I hope things ease soon. DD

applerose

I'm with the others on this. I was told I had asthma when I was 50 as I was experiencing breathlessness. You could have asthma or it could be something else. Your GP is the best person to ask.

Fionabee

My first thought was anaemia, could it be causing the fatigue and a lack of red cells circulating could account for the shortness of breath as its the red cells that carry oxygen. Trip to the docs called for I think.

judyw5

Thank you everyone.
I managed to get an appointment with my GP yesterday (which is a miracle in itself). He wants to check out my heart first - so another blood test on Mon (I already have regular tests which check for anaemia) then a mild diuretic to help get rid of possible excess fluid around the lungs.

He was very helpful, explaining the various diagnostic things we might try and he understood about the possible side effects of the RA drugs I am on and the possible effects of the RA itself. So I feel quite confident he will get to the bottom of it and he suggested I should use more pillows for sleeping so that I don't wake up feeling so breathless.

I must say I rather put off going to the GP as one or two of the doctors in the practice have been a bit dismissive in the past and I couldn't have coped with that very well just now - but it was fine.

May keep you posted but If you don't hear from me then we've solved that problem at least. And hopefully it will only be a blip and I don't need diuretics for the rest of my days!

Judy

dreamdaisy

Well, that's one step forwards and a good one at that because the right people are aware of what is happening and I hope you soon get to the bottom of this little mystery. I wish you well. DD

Starburst

I'm glad to hear that you managed to see the GP and that he's keeping an eye on you. I've also recently been having breathlessness and it's a bit worrying but they're running some tests too. Fingers crossed for both of us, eh? It's always important to get yourself checked out with RA as it can affect all parts of the body.

frogmorton

Gosh Judy!

That must have been scary. :shock:

I totally understand you not wanting to go to the GP - I don't like mine either and actually cry before I go because I find it so stressful. It really is wrong if it put you off going when it sounded like you really needed to.

It's a good thing to be able to post on here and your peers encourage you to go isn't it?

So glad you got a good response and hope you do feel better very soon.

Love

Toni xxx

applerose

It sounds as if your GP is being very helpful and wants to find out what is wrong. Wish they were all like that. Hopefully, it won't take long.

stickywicket

Well done for going to see the doc. Sometimes we have to force ourselves but breathing is rather important and breathing problems need investigating. I hope the tests show something mild and easily treated. Please keep us informed.

judyw5

OK - now for an update!
I had seen the GP last Thursday but by Saturday things were really bad. Couldn't use the bottom of my lungs for breathing at all so was panting even sitting still.
However on Sat evening I decided to check the side effects of the new medication I had been talking and upping the dose every week. Well, uncommon side effects of sulphasalazine include breathlessness and rapid heartbeat! And I realised that the breathlessness had been present during the first week and increased with each week as I increased the number of tablets. I felt so silly, it had just crept up on me and I hadn't noticed it happening until it got really bad. (I guess I was probably just struggling to function at all). So I stopped taking them immediately.
Knowing that the effects would take some time to wear off, I phoned NHS Direct who fixed me up with an appointment with the out of hours doc at A&E. He gave me an inhaler and set me up for an xray to take back to my GP as being the only way to tell if there really is fluid around the lungs.
Inhaler is helping a lot but not yet dealing with it altogether. Will go back to GP armed with Xray and blood test and hope the effects of the sulphasalazine are reversable - soon would be nice,! :roll:

stickywicket

No need at all to feel silly, Judy. As you said, it's an uncommon side effect of the sulph so very few people will experience it. I'm glad you figured it out and took the necessary steps.

Seeing the GP is a good next move but bear in mind that, if you have to come off the sulph, only the rheumatologist can prescribe a new DMARD so it's probably a good idea to ring your rheumatology helpline too

dreamdaisy

I second that, GPs are OK-ish for the likes of us but your rheumatology unit should be informed. I hope things are easing for you. DD

judyw5

Sorry folks, I forgot to say that I have phoned the rheumy nurse and she says to stay off the sulphasalazine and we will discuss options when I see her next, which is on Monday.
I must admit that I am tempted to ask for a month off trying new things. Both the methotrexate and the sulphasalazine produced bad side effects quite quickly and I'm off to Cornwall for two weeks on Sat of next week. It's a pity about the sulpha though as underneath the breathlessness it was beginning to deal with the fever, sweating and fatigue and now that is back with a vengeance. Maybe there is a halfway house to be found? ......

The breathing is still a problem but much better than it was, Thank you for asking. My ankles are beginning to swell as the weather improves so maybe there is a fluid component too. I see my GP also on Monday so we will see where we go from here.

It's so helpful to be able to share on here and thank you for your support. It helps to write it all down and know that you understand as sometimes it's so complex that we can't expect family and friends to grasp what is happening to us.

Blessings

Judy

stickywicket

You are so right, Judy. We can't expect family and friends to understand all the ins and outs of this and it can be an ongoing problem knowing how much to tell them to keep them on board and not make them feel left out but not telling them so much negative stuff that we overwhelm them with things they can't be expected to solve.

I'm glad you'll be seeing your rheumatologist. I can see the attraction of a 'month off' meds, especially if a holiday is involved and, as long as it's just a short postponement, it's simply a matter of weighing up the pros and cons. (Did I say 'simple' ) Your rheumatologist might suggest a steroid jab to tide you over until you get back from Cornwall. If so, you may well feel cured – temporarily – but don't be fooled :roll:

judyw5

Latest update ....
The breathing started getting much worse again so have been to see the out of hours doc at A&E again. Different doc not much help.
Anyway, saw Rheumatology Nurse today and she and the consultant took a look at my chest xray - mild build up of fluid round the lungs and slightly enlarged heart. They think it may be the results of an infection but are pretty sure that it's not the sulphasalazine so I can go back on that when I feel a bit better. They also seem sure it's not the RA that has caused this and said I should see my GP.
Had appointment with GP already booked, was very helpful. Recommended continuing with the diuretic, ( i had stopped it as I thought it might not be good for my kidneys) and the inhaler and to have an ECG this week. He is waiting for the last and most important part of my blood test to come back but is sure I have .... wait for it ... Heart Failure. !!!
They seem not to talk about heart problems but heart failure - and I suppose it makes sense as the heart is, at least in part, failing to do what it should do - it just sounds so dreadful. Anyway he is expecting to have a phone conversation with me after my ECG and before I go away on holiday and is organising an Electrocardiogram for when I get back.

He also took me of Naproxen so might find that a bit difficult painwise for a bit.

I know this is a bit long winded but I have found it helpful to read other people's stories, particularly relating to their interaction with the medical profession. The results seem to be a bit patchy but there are still some good GPs and consultants out there.

stickywicket

Thanks for the update, Judy. It's good for people on here to learn that sulph wasn't the culprit for your breathlessness and good, also, that you can continue to take it but, I guess, it must be hard for you to get your head round what now appears to be the likely source.

I think (but please don't take my very amateur word on this) they call it heart failure rather than a heart problem because it's a different beast to eg a leaky valve. However, your doc is the best person to talk to about such matters and everyone concerned seems to have responded quickly and well.

As for good or bad docs, a forum such as this is more likely to attract complaints than accolades. Indeed, anywhere in life people are more likely to complain about what they are dissatisfied with than compliment on good service. When Mr SW was taken to hospital a few years ago he was cared for by a wonderful little nurse who had formerly worked at our local supermarket. On leaving I thanked her for her excellent care and told her she'd been wasted at M'sons. She said no-one had ever said such a nice thing to her before. Really? REALLY :shock:

judyw5

Hi SW, how sad that no one had said how much they appreciated her before (the nurse)!
We all know how much we are encouraged when others thank us and complement us so we should be doing that as often as possible for other people - in fact wouldn't it be great if we had a whole grass-roots movement to spread affirmation through the whole nation and beyond ..... a great antidote to the anger, hate and extremism of our present day society. Sorry, mustn't get onto politics here! But it could be part of a counter narrative to extremism. One in which we could all play a part.

Must remember to play my part and say thank you to my GP and the rheumy nurse.

Judy

dreamdaisy

I apologise for not coming back before now, the heat has been defeating me. My mother had heart failure for the last few years of her life (she lived to a goodly age and had enjoyed good health until the ravages of age made their presence felt), your description rang a bell or two but I thought it better not to answer that particular door. It's a double-edged sword, isn't it? Not the sulph (good news) but maybe another condition to contend with (not so good news). Humph.

Ma found that both extreme cold and extreme heat would trigger bouts of breathlessness, as well as making too much of a physical effort (shunting furniture etc.). She found it hard to accept that at the age of 85 she could no longer do what she could ten or twenty years before. She took BP tablets plus a small daily dose of Aspirin and had a touch of OA here and there. How are you coping with this current blast of hot weather? I hope you are sipping plenty of water and staying in the cool as much as possible.

Having dealt with medics since childhood (and my Ma being a stickler for manners) I have always made a point of thanking people and taking some interest in their lives. My reasoning is that it's better to be remembered as a pleasant patient rather than the opposite: some of the patient behaviours I've witnessed over the years beggars belief. Medical staff are often on the receiving end of very unfair and unjust comments, probably caused by frustration, pain and selfishness but, as my mother drilled into me, ill-health is no excuse for bad manners. DD