Originally Posted by danaalex
Sorry for not answering quicker but I had some problems with my grandmoter who has a vascular attack...ufff it gets better and better
First of all thank you so much for answering to me! it means a lot, secondly I see that is unbeliveble what we are going through....the symptoms are very strange...and the doctors really don't understand...it is very hard when you go through this and u have no where to go and who to tell. Until 4 months ago I was ok, everything was fine I had a normal life..and than all at once everything crushed...
The problem is like u said that the doctors really could not put all together the symthoms..allthough everything started at once. The pain in my colon is strange i feel all my colon and it hurts me in each moment ...if i wake up at night it hurts me. It's inflamed or I don't know what to say. And it hurts me on all the trayectory not only on the left or right...everywhere. Anyway I totaly agree with u regarding the medicines...my rheumatholog didn't know what treatment to give me but i'm not sure that i would have taken it any way...but the problem and the big question is: when do we know that is absolutely necessary to start taking some treatment? when we start feeling worced? what is the danger if we do not take the treatment? can we avoid that the desease will get even worced by takeing the treatment? judging on the side efects of these medicines...I don't know what to say...I really really hope that it doesn't get worced than this...and i'm realy concerned for the pain on the artery in my head..pfff..
I'm so sick and tired of all the hospitals and the doctors like you can not imagine. Also I am trying to find answers alone and do a lot of reading... but it's pretty hard because I get tired so easy...this tiredness is unbelivable and sometimes the brain fog. Are you takeing anything for that? And you were right also about the board ...I see that there are also other people that are going through this and I am not so alone...it's pretty hard to be so missunderstood by the family who has no ideea what u are going through (family meaning a brother because i don't have any other family) , friend who look at me like i am crazy and don't understand how i can feel so bad when my blood work looks normal..and finaly the doctors who look at me and say they don't know. Anyway I am also searching for doctors everywhere ...hopping in a bit of good luck because we need it,
let's keep in touch let me know if u discover something,
Ah I wanted to tell you, I spoke on a forum with someone who had sjogren and also sclerodermya (I don't know how to spell) and she keept a diet with only vegetable and fruit juice and some vitamins ..no solid food etc she gave me some details but I don't know what to say...other people said that they felt better when the went on a gluten free diet and no grain diet...I also started this one and it seems slightly better at least with the brain fog nothing else..
I wish I could speak with a doctor about these issues but unfortunatly I haven't found the right one.
Sorry for righting so long...
Best wishes, Daniela
Hi Dannaalex, My, I so feel your pain and am concerned. You are having so much more than I am. To this point, I haven't had the brain fog or the artery pain but I know well that that can change. I totally get the frustration of not having anyone to talk to about it OR doctor's that understand. I have Celiac Disease so I am on a gluten free diet. When I was diagnosed with that the hospital continued to feed me gluten until the doctor caught it. I was in dehydating and seriously so. It took 10 years to get that diagnosed. So way back I learned that I had to figure things out pretty much by myself and that is happening now with the Sjogren's. I don't have a Rhumy so when that comes I will have to go out of town to see one and that doesn't seem very practical to me.
I think at your point, and it is only what I would do if I was having all your problems, I would think seriously about taking some meds for it. It truly sounds like you are not enjoying life. From what I understand they start you on the lowest dose possible and only go up if the given dose isn't helping so I would give it a try and THEN make the decision if you can or can't take the side effects. I have been very fortunate to not have the fatigue very often. That is a tough one and I am sorry you have that symptom. None of this is easy. Also, I want to remind you that it does seem to be a flare thing and I have only just recently come to be noticing that as my symptoms are greater than they were for a long time. We need to remember that this is a inflammatory disease. I am now having the joint and muscle pain that so many have. In having to figure so much of this out ourselves, I would also suggest joining the Sjogren's Syndrome Foundation, if you haven't already. I continue to ge some very beneficial information from them and they have credible books and CD's available.
I was sorry to read that your grandmother is having health problems. That is , I am sure, very worrisome to you. Hope she is improving rapidly.
My best to you and hang in there. Stay in touch with us all. I am so grateful to have found this board. I know, for me, it really helps to know that others are actually HEARING what I am saying. Hope it helps you as well.
cbg10 P.S. You surely never have to apologize for writing any length of message. It is good for us to explain what we are experiencing so the others know what we are going through.