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fibro.with rheumatoid and sjoergens
8 Replies
lucie - August 26

Today I am going mad--anyone out there with coping strategies for days like this ?
I am not a drama queen but I am fighting back the tears. If only one could understand why these
awful flare ups occur.
Sorry to sound so sorry for myself. any suggestions


nikita3 - August 27

Sorry to hear you are feeling so bad, lucie. What helps me in that situation is to remember that nothing is permanent. Everything comes and goes, whether it's good or bad, and so eventually this will pass too. It's just a matter of waiting until it does. In the meantime perhaps do some gentle things that you enjoy doing and will distract your mind, such as reading a good book or watching movies/DVDs.


lucie - August 27

Thank you for taking the time to reply nikita. You are so right, nevermore so than with these awful ailments. Everything does indeed pass, to some extent, but at its height it just grinds you down doesn't it ?
Not sure what today will bring. If I manage to have a shower and wash my hair I will feel that I am winning. Can't read, eyes too sore, but you have given me an idea, I could listen to a book C.D. I will do this. Bless you for caring.


January - August 28

Hi lucie - not sure if you were suffering more with physical distress or emotional. Maybe some of both! Nikita said what my wise old doctor used to say "This too shall pass." And she's so right - it's good to find something to distract yourself if you're feeling upset.

I also have days when I'm too fatigued to take a shower. (kinda embarrassing!) I finally quit beating up on myself. For some reason, a lot of us have that trouble - we were discussing it on here, and it might be that the heat from the water weakens our sensitive bodies. Someone mentioned that we have more trouble maintaining the proper temperature. Years ago, I was so sick I had to put a little wooden stool in my shower so I could sit down while I was in there! It's better now, but still something that takes a lot of energy. I don't know why some of us have this problem, but don't be hard on yourself. You're not alone!

There are other people on this site that have the same illnesses you mentioned at the top. So feel free to come on any time and just vent if it helps. When I'm fatigued and isolated, coming online helps me a lot - I have made some nice friends here - and they really "get it," unlike most of the normal people in my everyday life!

Hope you are feeling better tonight.


Jocelyn - August 30

Hi Luci,

You mention sore eyes, do you have Sjogren's as well? I have Sjogren's with fibro and I my doctor has me on flaxseed oil for the eyes. 1000mg twice a day and it helps a lot. I also use the gel's withough perservatives for my eyes. That helps a lot.
take care


lucie - September 1

Hello Jocelyn,

Yes I do have Sjogren's with fibro and rheumatoid arthritis. I will certainly try the flaxseed oil. Thank you for suggesting it. I have also taken hydroxychloroquine for a number of years now for the rheum., and because I recently have had stabbing pains in the eye as well as red,dry eyes etc. think maybe I should see the doc.
I appreciate your taking time to respond and hope that you are free of it currently.

All good wishes,


Jocelyn - September 4

Hi Lucie,

Yes, it is always best to see a doctor. I was put on hydroxychloroquine from my problems, I was on it for 4 years and just came off of it. I ended up having an allergic reaction and I felt I was sore being on it. We are all so different.

As far as the stabbing pains in the eye, I only got them when I used Restasis. I cannot use Restasis because it causes jabbing pains in one of my eyes only. I'm not sure it was even working, so for me, not worth it.

Keep in touch,



lucie - September 5

Hi Jocelyn,
I saw my optician yesterday and as you also suffer from sjogrens I thought you might be interested to know that sometimes with dry corneas there can be a little crack,or tear. If this gets aggravated it could cause these momentary stabbing pains. Her recommendation was to use the eye drop three times a day. I tend to only use them when it strikes.
I don't want to alter my hydrochloroquine or methotrexate, because although there are times when it all feels desperate I look back several years on my bloodtests and there has been an improvement. It is good to share though and I do hope that your recent medicine changes show a marked improvement. I guess that with these diseases we are in it for the long haul and have to be on the lookout for new developments.
All good wishes,


Jocelyn - September 9

Hi Lucie,

Sorry it took so long for me to respond. It has been busy in work and our Central Air at home went down and the heat bothers me so much that I just can't do anything. We closed our pool the other day because we had it scheduled to be closed, I had wished we now had left if open longer. At least it was a place to cool off. Oh well, the weather has finally changed. The storms brought cool dry air and it is nice in the house today.

Thank you so much for sharing the information you received from your optimologist. Every little piece of information is so important, one never knows when one will need it.

I'm happy to hear that your medication has made progress with all of your diseases. It is nice to hear when things do work.

We do have a lot to deal with for the rest of our lives and we will have our ups and downs.

I hope your eyes are feeling better. Did your Dr. say anything about flaxseed oil? I am just curious because my doctor in Boston said it as been working well in clinical trials. Not all doctors are using it yet.

Best to you always,




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