Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Breathing difficulties

Thanks Molly

I have heard that there is something going on at Bordeaux with treatment of AS - I am investigating this.
I think Limogues has some kind of auto-immune specialist hospital too. Am looking into these - any other ideas or confirmation of either Bordeaux or Limogues being a good bet, very welcome!
I just tried the humming instead of breath holding approach! Ingenious Ms Molly! Far less effort and discomfort and entertaining to boot!!

Cheers ma dear

Hey Tinkerbell! Sorry to learn of your new symptoms. I haven't noticed breathing difficulties but I do know they can happen when your ribs are involved. My ribs are involved just not that much. Wendy brings up a good point. You might want to get evaluated to make sure it isn't something else.

Craig

Humming is great way to strengthen lungs and increase lung power - prob our resident thespian Kat will reinforce this! Agree with Wendy though, get it checked out. IF it gets to real hurting stuff - then, ER for you. Could be pleurisy or summat - pleurisy is horrid. (Nothing like putting the wind up you...!)

Will go check out auto-immune specialists for you, but Limogues is the one I had in mind. Believe they have a 'reasonable' rheumy dept there. But possibly, no doubt, yr doc will have a 'fave' guy or fave clinic! (Heard at the dinner that 'they' get kick backs for the clinic appts...but that 'could' be heresay, though the person who said it was French!)

But take care and, keep hummmmmmmmmming

Hello Wendy

Thanks, I think a trip to the doctor is a good idea.

As to what brought on my flare, since I'm on NSD, that's a good question.

I did NSD when I got AS DX and went into remission for many years. Over this period I have had three children. I ate normally during pregnancy and nursing of all three children as I my AS was not "active" and I had heard that it was not advisable to follow NSD incase you deprive the baby in any way. Not to mention that I needed a lot of energy during these times, especially running round after first two, while pregnant with the third!

Before Christmas we had serious financial problems due to my husband injuring himself at work and there being a delay with social security money. We ended up with a very small food budget and consequently ate a diet of mainly pasta and noodles (cheap food).

Add to that in the New Year I had an accident where I fell down my front steps in the ice and injured my foot, toes and jarred my back and whole body really.

My foot got better over a few weeks - but then suddenly got worse again. It was no longer the injury my AS had kicked in (my original pain sites with AS were my toes, lower back and buttocks).

Symptoms have just been following ever since... lower back pain, upper back pain, headaches and neckpain, pain in buttocks and down legs (switching sides on different days), stiffness, clicking and grinding etc etc.

Started NSD again 8 or 9 weeks ago. Was starting to improve at the beginning. Had few setbacks with eating wrong foods while I waited to get some iodine (I am eating a very different diet these days - have family, live in France etc).

I have gone a bit down-hill this past week or so. Getting such bad headaches, fatigue, the breathing thing and AS pains (which are still manageable).

I don't know if perhaps, with my immune system being a bit low, I am prone to infection and have perhaps got a chest infection or something? Not sure. I do know that my AS pains would be a lot worse if I was eating starch as someone normally would. I know this because when I slip up it's like someone has turned the pain up on a dial within hours.

I am continuing with the diet, but I have no back up plan. I think it's as well for me to check out my options in case I suddenly get much worse and I have to wait for an appointment.

I also think that I am much more sensitive to starch this time around. I never cut out things like ginger, pepper and other spices last time - but they have a very definite effect on me at the moment.

Got to figure all this out in French too! Which will certainly test me to the limit!! I am going to try and write everything down and translate it as a sort of referral letter of my own to get the ball rolling. I have to wait to have my medical records sent over from UK and then have them translated into French by a professional translator.

In the meantime, I am going to start by seeing my local doctor and getting some kind of referral to check me out.

Thanks for your concern, Wendy

Thanks for the well wishing Craig,
I will get checked out.
I don't think I have anything that is involved to any great extent (if you mean damage), so maybe it's not my AS giving me problems.
Hope you are doing OK at the moment - I know you have problems with your feet, like me (although mine are not bad at the moment), when they are bad you certainly know about it don't you?!

Thanks so much Molly!
Still no pain, so hopefully nothing too serious.
You're right, doc might have own list of people to see - will make sure I have little list of my own before I go to see him.

http://www.chu-limoges.fr/rhumatologie.html
CHU Limoges Hospital. Excellent line up, they have what looks to be a very good rheumy dept. AND, AS...ah-ha. ALSO physiotherapy. Looks like they have much better facilities than here in Brittany. Here's a 'taster' more on the website:-

La rhumatologie est une spécialité mixte de soins et de recherche ayant pour but de traiter et surtout de soulager les douleurs de l’ensemble d’affections improprement appelées « rhumatismes » : arthroses, arthrites (tout particulièrement la polyarthrite rhumatoïde et la spondylarthrite ankylosante), les maladies rhumatismales des personnes âgées et tout ce qui à trait aux phénomènes douloureux.

Notre service de rhumatologie est organisé autour de quatre spécialités :
•la prise en charge des rhumatismes inflammatoires et notamment les traitements par biothérapie,
•la prise en charge de l’ostéoporose avec une ostéodensitométrie avec morphométrie,
•l’échographie ostéo-articulaire avec un appareil d’échographie situé dans le service,
•une consultation multidisciplinaire de la douleur chronique avec des lits d’hospitalisation.

(looks like they are into the biotherapies...but! You can 'always' educate em... )--------------

Here's the link for the services offered: WOW Scroll down...

http://www.chu-limoges.fr/nos-services/

Hey, Tink:

Until well into NSD--and antibiotics--I had asthma. I am certain this was related to AS, but it would come on during high pollen years or when I ate macadamia or Brazil nuts. I got by with some potassium chloride on occasion, but after a very short course of antibiotics and being on NSD for about five months, the asthma totally relented. Certainly, I tested it by eating a full jar of macadamias. Nothing.

It sounds a bit like asthma, but You should not have it for very long. Check with allergy specialists in the area to find whether more people are affected in Your area at the moment.

HEALTH,
John

As a matter of interest I'm going to put in the le Point comparison between hospitals. Will put Limoges v Rennes. Then Limoges v. Nantes.

Brest aint worth bothering about. They are a bit 'also ran'.

This is great info, Molly.
Thanks that' so kind of you - would have taken me ages to find that (if ever!!)