I have just come out of hospital following loss of vison. Had a biopsy and found it to be Arteritis. I can see fairly well now although my left eye is blurred. This weekend I found I couldn't copLast Octobere with the headache, all I want to do is sleep, I have indigestion which doesn't leave me, the sun is brilliant but my eyes don't like it. My mouth is sore I can't taste anything if I eat, as an insulin dependent diabetic my bm's are through the roof. Last October I had a left Nephrectomy for Nutcracker Syndrom, since then I never picked up and once again an emergency admission for failure of right kidney which they have said it is hydronephrosis. I can't do both. But I want to live on for my family, please help...
Sheila
You are in shock..........give yourself some time to rest and then follow this link which is th epinned section of this thread. You can go to all of the website addresses, but if you go to the NorthEast and click on the Map on the home page you will see links to support groups.
http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Keep coming back and I promise more will be along to help you.
My indigestion is under control with Omeprazole, but I can't do not taste anything if I eat, my mouth burns, tongue on fire, and a diabetic for 55 years my bm's are through the roof. But still here to bitch about it, we got to hang in there. Your still here, so you got the right stuff. There are always people here we are in this battle together!
Hello Sheila
This is really tough stuff you are having to deal with and there are many here who will relate to the struggles you are having. There are some real 'experts' here who will talk about some particular aspects which will certainly help you but the main thing is to keep coming back to this forum for any support you need because it will be invaluable. They will all come online soon !!
Very best wishes
Rimmy
You have had your fair share lately Sheila. I am thinking positive thoughts for you from afar. Maybe if you give in to the desire to sleep whenever and however long you need, hopefully your body will bounce back a little.
Then get yourself some dark, trendy sunglasses and soak up a little of that sunshine and vitamin D (but only if the Eye Dr/Arteritis person says it is OK.
Take care
It could be that your mouth problem is something called burning mouth syndrome.
I have it on the Predinisone also when I got under about 10 mg it faded away. I hope it will this time also!
So you had a sensitivity to foods in your mouth when you were on Prednisone but when you dropped your dosage below 10 mg it went away. I am very interested in this because I am having serious problems with eating myself and am beyond frustrated because I can hardly eat anything without it burning my tongue. And have no idea why. And tomorrow I have an appointment with my dentist to start investigating the reason why. I've already seen my doctor about it and because I had read that anemia can cause this I got that checked and that was fine so I am at a loss as to what could be causing my tongue to be so sensitive to foods. And now hearing what you're saying is making me happy because it gives me a potential answer and I am above 10 mg..
I do not have to be eating my mouth burns, tongue burns all the time, we have been talking about trying so ice cube made with fruit juices.
Well that sounds exactly like burning mouth syndrome. Which is what I thought I had for the longest time but I now know I don't have. If you do Facebook you should look into the burning mouth syndrome Facebook group it will give you a lot of information about what the other people do to help combat that problem. It's a horrible condition to have to deal with. I was getting these horrible stabbing pains in my tongue which my dentist insisted was burning tongue syndrome but once I started in that group and heard the other people talking about their symptoms I realized I do not fit in that group. I don't know what those stabbing pains were from but they went on for years and now they've just stopped and I haven't had one for probably a year now. But I do have this horrible burning tongue when I eat.
No my mouth burns, but it's just one of the Pred side effects for me, hell my Diabetic neuropathy is driving me nuts, along with the shakes. I will get down to a lower level and be much better. Love to just jump down, but will go slowly. Keep walking and smiling. Thank God I am here to keep fighting!
You have a serious and chronic systemic illness - your body is asking for you to sleep in an attempt to help it heal, it is a common effect. You shouldn't be running around trying to live normally - behave as the poorly person you are at present. It WILL get better. In a year you will look back and see how far you have come - everyone does however awful the beginning was.
Is there any possibility the burning mouth and the ingidestion are connected? Reflux can lead to horrible mouth symptoms. You should have been put on stomach protection medication - a PPI such as omeprazole is common. However, for about 1 in 3 people they don't work so if you ARE taking one and still have the gastric problems you may need a higher dose or a change to ranitidine/Zantac which does the same thing but works on a different principle.
Where are you?
Forgot - the blood sugar problem is common with pred and I suggest you speak to your diabetes team about cutting carbohydrates drastically. It is now recommended by even the American Diabetes Association for medium term BS control - for some reason they think it isn't something people can do long term. Blowed if I can understand why not as I know plenty of people who manage it just fine as a lifestyle change.
Too right! I have so much trouble allowing myself to eat carbs now, much as I need to in order to gain weight. It just doesn't seem right anymore. And when making the lifestyle change I bcame aware for the first time how very much wheat I was consuming!
I am actually losing weight, have lost 4kios since being in hospital, but I suppose coz I have CKD and on a renal lifestyle the hospital didn't feed me well, I am starving on the preds but eating more and losing more. Indigestion was bad yesterday, Doc came out today and said I could take 2 opeprazole. I am already on paracetamol and Oxynorm now he has written me up for Tramadol.
A few years back I decided to try a no carb diet, look back now I don't think anyone thought it was a good idea. I was riding the bike 4-5 days a week and planning a metric century. Did the century with no problems, with no drop in performance. We just do not need the carbs, did not do much for my diabetes, I went back to eating my favorite food, pasta. Just have figure out what is important!
I am an insulin dependent diabetic and at present my diabetic team have sent me the e mail about tritating what Insulin units i can have, this was working well but just now my bm was 26.3. I didn't hardly have any brekkie but at lunch just a salad and this evening a piece of salmon. My mouth is so sore my right eye is still blurrred. I have pain mostly over both temporal bones across forehead, back and shoulders. Bruises are appearing everywhere but I have not noticed bumping into anything. My finger nails are growing but spindly, why oh why is so much happening at nonce.
Thanks to all who have wriiten I just need encouragement to continue as yesterday all I wanted to do was die. But now I am feeling slightly more optimistic with all the replies I am getting.
Thanks, I have too much vit D as I have osteopenia, the hospital stopped the calceos I have been taking since I was diagnosed. Now I am have to have a blood test for renal and for the calceos. Though I do have some cool sunglasses, plus the patch the hospital gave me for my right eye.
I texted my dentist and she is seeing me on Wednesday. I'll ask her about that thanks.