Hi new here my question is do any of you suffer with extreme breathlessness. ?

[Shadows-walker]

I have been fighting this diagnosis for the best part of 3 years . Went to dentist had bacteria infection put straight in my blood stream after root filling ,told in was to be given antibiotics ,but the dentist forgot ! .was rushed into hospital with my body shutting down apron 1 week later after feeling very unwell could not walk , hair started to shrivel up etc , was stablized and because I was stupid insisted I went home as youngest home alone at 17 and siting a levels didn't want her worrying ,was nursed at home by GP and district nurse , live mid Wales nearest hospital 40 miles away . Eventual told I had reactive arthrits and cronic fatique , a year later started talking about rhumatoid and fibro. 2 years later raynaulds and and lupus as I had lupus antibodies . I have suffered with gutetate psysoris in past as well ,hair loss, very unwell with all my pregnancies but always ended up with 9 lb babies and only 5 ft 3 . Also have something called Gilbert's syndrome which effects the liver ,(just can't break down toxins very well ). Rummie says I have had some very strange health issues in my life but is adamant I don't have lupus , I have been off work since jan . They are now telling me I also have Sjögren's syndrome. I have had lung function test ,asthma clinic, chest X-ray , CT scan ,echocardiogram , these have all come fine which is good . Am still waiting on lip biopsy and eye specialist . Like many of you on here I was extremely active till all this kicked off my wieght has gone up by almost 3 stone .most of the time I have to use a stick to walk and of that then starts my wrists off . I thought I was on the mend , so yesterday I thought I would plant a few seed so went by car as I can't get home if I walk as I live up a hill I can walk down but it is an extremely interesting experience trying to get home . Any way went to the hardware shop to buy a small bag of compost , I could pick it up but I could not get it across the shop to the counter ,I suppose in a way this is improvement as in jan I could not carry 2 bags of sugar any way I my question is do any of you have similar experiences .? Thank Christina

[TheAuthor]

Hi Shadows-walker

I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read what a horrid time you have endured with all of this, and I genuinely hope that you can find some resolution and relief to these issues.

I have extreme breathlessness, but not because of the Fibro, but because I have asthma and COPD. From what I understand from your post, you do not appear to have anything of this nature? Or have they given you any inhalers? I have pasted the two NHS Choices web links to these in case you want to read up on them and compare to how you are feeling:

nhs.uk/conditions/chronic-o...

nhs.uk/conditions/asthma/Pa...

I was wondering if you believe that you feel the way you do because of the Fibro, and the chronic fatigue that can accompany Fibro? If so, I have pasted you the link for FibroActions symptoms for you to read:

fibroaction.org/Pages/What-...

As I am not a doctor, I cannot say what is happening to you, or what exactly your illnesses are. I think the best course of action is to read up on as much as you possibly can and discuss with your GP what it is you are feeling and try to get them to diagnose you one way or another?

I have pasted you the NHS Choices page link for Sjögren's syndrome, and after reading this I would not be able to tell the difference between Sjögren's syndrome and Lupus?

nhs.uk/conditions/sjogrens-...

I want to wish you all the best of luck and I genuinely hope that you get the answers that you are looking for?

All my hopes and dreams for you

Ken x

[Shadows-walker in reply to TheAuthor]

Hi ken thank you for replying and info , I have been given an inhaler and told use as I see fit ,when I had chest X-ray back in February the radiographer saw how bad I was and told me I was having full blown asthma attack ,but I only get like that after I push myself and ignore my symptoms , I have been told to take things gently and listen to my body they are putting me on a pain clinc waiting lists, I don't know where the fatigue comes from but I am like a completely different person and I don't take being dependent on others for help very well , I have walked my dogs today which was lovely but I am no exhausted and could only manage cheese on toast for tea ,but that's are secret ,I have been reading post on here for the last month I think and everybody seems lovely and so supportive of each other ,and it's nice to see how most have kept there sense of humour , I've been smiling more reading some of the post on here .sometime you forget to do that it's quite a tonic

[TheAuthor in reply to Shadows-walker]

Hi Shadow-walker

I am delighted that you are enjoying the site. I personally think that asthma symptoms can sometimes be misleading as I have a peak flow monitor to measure my breathing but I have been caught out a few times by inaccurate measurements.

I want to wish you all the best of luck with your symptoms.

Ken x

[Hidden]

Hello, I suffer badly from breathlessness and fatigue.

Both my Neurologist and Rhumatologist put it down to Fibro.

Heck I hate trying to spell when the fog is thick.can`t even find the right keys..... dont forget though yours may not be.

Hugs sue xxx

[Shadows-walker in reply to Hidden]

Hi thanks for replying I always have trouble spelling ,but back to the subject at hand ,I feel ancient I have trouble keeping up with people now ,my daughter says it's revenge because she could never keep with me ,I feel like my legs are weighed down all the time but my dogs like it they can sniff when is walk them now ,I used to power walk my old boy , and the walk I do used to take me 25 mins now it takes me an hour and a half .any way I did walk them today and now I am exhausted time far a nap soon I think . Thanks again Christina.

[Hidden in reply to Shadows-walker]

I have had to give up walking my dog and that I really miss. It was my hubby that complained I walked too fast. I am looking for a cheep electric wheelchair the at least I will be able to go with them.

[Shadows-walker in reply to Hidden]

I have a young man from community support who walks them on a daily basis , but about twice a week I find I can manage it , especially if the sun is shining , which doesn't happen a lot on mid Wales :-). The dogs think they have died and gone to heaven today as they had 2 walks ,both are flat out asleep at the moment one 18 month old beagle called Murphy and one 22 month old lab called shadow. I re homed shadow last summer when I was hydrocholquinne which is how I over did it I think as it took my pain away as well as the fatigue , rummie won't put me back on it until I see the eye specialist and he has said it might be something different but I won't know till July which is when I see him next .

[Shadows-walker in reply to Shadows-walker]

Also Murphy belongs to my son , but he nearly got evicted last November as he lives in a flat in Brighton , and could not keep him there .so he came to stay for a few months and it now looks like he with me until I can't manage, and we will keep them both together and Evan will have them both .

[mitziblue]

Sounds like you have a very bad case of lupus I have a friend who battles this and has a lot of your symptoms. Also sounds like your dentist dropped the ball, big time. If the infection is still present after this long seems they could give you stronger antibiotics? I hope this is somewhat helpful sweetheart!!! Praying you find some answers and get rid of the infection. xxxx Mitzi

[Shadows-walker in reply to mitziblue]

Hi the infection isn't there now , but I am left like this , I think I have lupus but my consultant is instant that I don't he tell me I have connective tissue tissue disease I had quite a heated discussion with him last time ,

I saw him and I ended up in tears so he threw depression in the mix i don't feel depressed just extremely frustrated and lost and alone , I live by myself and my daughter comes on term breaks only she is off to japan in august for a year to teach ,so then I will have to learn how to Skype as I have also been told I wouldn't get travel insurance , anyway thanks for replying Chris

[mitziblue]

I think I'd see a lawyer and go to a different doctor for sure. No one should have to suffer because of negligence. That's why they carry insurance. Best of luck. Mitzi

[Shadows-walker]

Hi thanks for replying ,I have been told I have a pre disposition to auto immune issues as my mother and my aunt have both ended up in wheel chairs due to rheumatoid arthritis ,also my gran raised me and I thought she was a lazy old woman as a teenager ,because she lived off distoldgessics and would come down stairs and just sit in a chair all day telling me and my little brother to do different jobs .my father was always telling me what a hard working woman she was but that she had rheumatism ,I now understand in hindsight so much more and feel quite ashamed . But I did warn local-people not to go that particular dentist the night I was admitted to Hereford hospital the doctor that admitted me called him incompetent ,I just thank god I am still here and it's not cancer I lost my father to leukaemia 6 years ago and that was suffering .anyway as you see I do get frustrated but I try and find something positive to focus on even if it's walking the dogs and the sun is shinning . Thanks again for your kind words chris

[Mrs_Somerset]

Hi there,

I am sorry to hear things have been so difficult for you.

In reply to your query, I too am breathless, just going up the stairs takes it out of me - previously ran and bounced all over the shop. At first the doc tried to put it doen to anemia, but I don't have anemia, all blood cells the right shape and accounted for - thank-you very much

I find it so hard to pace myself, yet I know it is what needs to be done. It does sound like a little bit of an improvement from earlier, at least being able to lift the compost, but again, like me, you need to be careful not to do too much one day just because you can.

Sending you Big and Gentle Hugs

M

[hamble99b]

In addition to the links I see Ken (theauthor) has added, it might help if you join another hu forum, vasculitis uk

healthunlocked.com/vasculit...

and search "route map..." for sjorgens.

this site has links for many auto-immune disorders.