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

So again I'm wanting reasurance
I'm in a low place... My belly hurts, back still hurts, knees ache, blah blah blah
I'm sooooo dang itchy especially at night. So bad that I can hardly sleep. I have sores all over my arms, back, chest, legs, scalp all over! I feel ugly. Soooo ugly. I started enbrel and it does help but its like when some things get better other things surface! Why? I feel like its hard to come to a good place mentally when new things keep surfacing ya know. I've tried to keep things to my self lately and not lay it on thick to any one aroud me but I'm having a hard time myself. I don't want to upset others around me with this anymore but I feel like I can't carry it all! Its like being trapped in a hell. I'm sorry for throwing this but I'm upset and I'm scared and nervous and wondering what is to come with this! When is there a place of peace! This is so incredably hard. I know we have no choices in doing this but I just don't know. I realize I have to do this but I just don't know how. I'm tired of hurting being sick to my belly and having sores all over! When is it going to stop? I'm afraid of it now. I'm afraid for my future of lack of... Ok you all get what I'm saying! What are these sores and why do they itch? Any ideas?

Hi Zanni,

I'm sorry to hear of how bad you are feeling, and it really sounds like you need a break from this. With people around me, I choose not to lay it on thick either, in fact, I just talked about something like this last night to my wife. I told her that I don't tell her every time I hurt, only when I am at my worst, because that would be too often.

As far as skin conditions go, one that is related to AS is Psoriasis, which effects several people here. That's the skin condition that I think I have, and right now it's been bad on my legs, face, and scalp. Then you might want want to read about Eczema and other forms of Dermatitis too. Other skin conditions can come from deficiencies, medication side effects, allergic reactions, dehydration/dry-skin, and so on.

I don't know if this will help you or anyone else (as much as it does me), but Aloe Juice, and other aloe based products (soaps, shampoos, etc) really help my skin out alot. Being that I have allergies, and decided to get pets, we recently switched to anti-bacterial products and that made my skin condition sooo much worse right now. If we can just remember to do it, we'll get some aloe soaps today. Also, I have much better luck with natural and or milder soaps, because I have a bad detergent sensitivity, which make my skin break-out/flare-up. Try switching from powdered laundry soaps to liquids too, if you haven't already, and if possible, leave out the fabric softener. This could make a big difference as well.

Try to remember that AS pains, and skin conditions, do ease up. Sometimes we just have to try different things... which to me it's all hit and miss, but the efforts are worth it. Hang in there, and start feeling better soon.

Take care,
James.

Thank you! I will put some of those suggestions to work! Luck to you as well

Hi Zanni,

So sorry to hear you're having such a rough time at the moment

Have you mentioned these sores to your Doctor? I think James is right about the psoriasis. I get dermatitus on my scalp if I use most shampoos, and if you get this too, I strongly recommend coal tar shampoos, and anti-dandruff preparations to keep it in check once you've got it under control. You may be able to get creams for your body with coal tar in, I'm not sure. The other option is steriod based creams.

There is a great site for psoriasis, Psoriasis Association , which will give you more info about the condition.

Funnily enough biologics are one of the treatments!!

Hope you get some relief soon

Emma.

Hi Zanni - A 'yes' from over here. Psoriasis: can be especially bad on soles of feet, palms of hands and right ankle. But also have slightly on both legs, arms, hair line at back of head and has just started on elbows. And on my face. Plus the scalp dermatitous! Also, am allergic/reactive to most washing powders. I use liquids for all personal washing, and only use powders for household stuff. Am also careful of wasing soaps. Try to get no soap, cream soaps (and stick to cream dispensers.)

For my head I use Alphosyl, brilliant, but prob not available outside the UK. But surely does work. For the body, I use emollients - Dovobet and Dexeryl seem to help some. I keep clear of steroid creams as they do thin the skin - being old (read ancient) my skin is thinning anyways! But steroids are good for the bad case scenarios. Yes, biggie drugs are used to good effect for Psoriasis. Suggest that you consult yr health practitioner. He should be able to advise you. Also, do check out the various organisations - like psoriasis. Excellent information and good focussed-on-the-problem forum groups.

Hope you can sort - nowt worse than skin problems!

Molly C (France)
Keeping on Keeping on (as one does!)

hi zanni, sorry to hear how you are feeling

when you say belly, if you mean your gastrointestinal system, i'd tell the GP that i needed to see a gastroenterologist. unless you already are. in that case i'd ask that doctor for help.

as for the skin problems, i'd tell the GP that i needed to see a dermatologist.

whenever things get as bad as you say, it always ends up that i need a specialist in that area, even when my GP has tried to talk me out of it. took an extra 3 years to see an endocrinologist after the first time i asked, and now i am on thyroid meds as i should be. i learned my lesson from that, so that when my foot was so bad i couldn't walk for several days and didn't know what the problem was and my GPs advice was "well, if it doesn't hurt now......." and i told him, "no, i need a podiatrist, this can not become a new big problem. you know my history." and so he reluctantly gave me the referral, good thing too, because it really could have become a new big problem and the podiatrist helped me tons.

so, if you really don't know what it is and/or how to treat it, please do see the doctors about it.

i count so much on my doctors when i'm at my worst.
and not all doctors have been able to be there for me,
but over the years,
i've found a few that i can count on to not become overwhelmed,
to be able to not only access the problem,
but give me real solutions that really help.

and at the times when i really felt like i just couldn't take it anymore and wondered just how i was going to continue, just at my lowest points, things slowly started to turn around and get a bit better, at least to the point that i can handle them. and after going through several points in my life like that, its now easier to believe this too shall pass, because i've had the experience that it does.

,
sue

Hello Zanni,

Several years ago now (2003) I was having very similar thoughts, I was extremely depressed because of this disease and needed some help. I did not want to bother those around me either... coming here helped some and I received some support. I was went on some meds for a while for the depression.

Hopefully you can find some answers to help and start feeling a little bit better. Keep coming back to Kickas for support if you need it and remember you are not alone... we are all here for you so keep on Kicking!

Tim

Hang in there! There is ALWAYS a good day around the corner! I've been in your spot many times and somehow, we push thru and carry on.

for soap.. I have terrible chemical sensitivities (kids too) and have found that the chemical called sodium laurelth sulfate is a biggie for skin problems. It is in everything that makes bubbles. We use liquid castile soap and have no problems. Less itchy scalp (outside the usual AS sores) and our skin is MUCH better now.

I was wondering if you are having a reaction to the enbrel? Or was this skin problem normal for you?

Hey, Zanni

I don't have psoriasis but I get itchy big time - I get urticaria (hives) a lot. I have chronic urticaria and itch never stops...for me, cold shower or exposure to cold helps but not permanently...and it is really hard not to scratch oneself - I mostly manage not to draw blood but not always antihistamines help me as well, if it is not too bad. Downside of cooling my body is that if I overdo it - I get colds, which in turn worsen both my urticaria and AS.... :\

Anyways - there is lots of different ways our disease creeps up on us, and you need to look at all advices these good people are giving you and figure out what works well for your symptoms. You have all the time in the world to experiment, unfortunately, but also you care the most so you can be the best doctor for yourself. Sooner you start sooner you will find combination that helps you get some relief.

Stay cool and keep your spirit up. What doesn't kill you makes you stronger.

Thank you! I'm actually starting the lsd tomorrow! Nervous but anxious! I've been vomiting so often that my mom mamallama suggested it so I'm gonna give it a whirl! Thanks for all the suggestions & support! It means a lot!