Feeling like I don't do anything because of Fibromyalgia and Lupus with Sjogren Snydrome

[Denise1219]

I'm not sure if I am depressed or not I have all this medicine I have to take and I am still in bed with so much pain what is there to do

[EOLHPC]

Hello Denise...am vvv much relating to your post because I remember all too well wondering if I was depressed when I was mostly in bed & mainly housebound due to constant multisystem pain & debilitation back in the late 1990s (at the time I was in my mid 40s and the NHS was blaming all my health issues on a childhood concussion & spine injury....I knew the NHS meds I was taking daily weren't really helping...I knew I was sad & withdrawn, but it felt vvv strange to wonder whether there might be a bit more to those feelings)

I am pretty sure quite a few of us have asked &/or are asking ourselves a similar question. whether deep sadness is clinical depression or not...I think this comes with the territory we live in due to our health issues. And I know I'm not alone thinking this way

coping with these emotions & states of mind is vvvvv hard...and I think you're doing the best thing by reaching out to us... + reaching out to close friends, family, and a GP or GP practice nurse...or lupus specialist nurse...to all you feel are approachable.....and I'm sure you'll get vvvv understanding & helpful replies here on forum. I just want to send you a gentle hug with this reply in the hope these can be some comfort

For my part, the thing that helped me most was reaching out for counselling from my Alexander Technique teacher, who is also a qualified therapist...back then forums like ours weren't around....I felt totally isolated and very low.....she saw me now & then for over 10 years until the breakthrough recovery of my infant inset lupus diagnosis - and after that I continued to see her as & when I felt the need. With her help, I came to terms with my version of depression and learned to manage it "better". The next thing that helped me most was eventually getting onto a lupus treatment plan that really helps....I'm wondering whether your meds are really right for you....and am hoping your rheumatologist is open to looking harder at your treatment plan with a view to increasing its effectiveness

"recovery" from depression began when I was able to accept & share my sadness with the right people who really cared....the understanding, support & compassion that began to flow my way then has meant more than I can find words to express....and joining our wonderful forum 5 years ago continues to help me daily... for me, managing my version of depression is very much a 1 day at a time thing...I sense you know what I mean

Courage Denise....XOXO coco

[Denise1219 in reply to EOLHPC]

Thank you for reaching out this a lot of help

[EOLHPC in reply to Denise1219]

❤️🍀❤️🍀

[Vasuna1]

I too have Sjogten's. Found out be ulcer and hole drilling through my eye.

I read up on it recently again as constant. Said Remicaide helped it

Others said may cause it. It was really bad had My infusion noticed an inprovement. I also started eye drops religiously.

I am telling myself to move to Hawaii as the humidity would be much better for my eyes. However i am told the barometric pressure would be bad for my RA!! Well suffer in paradise..

Just a fantasy at this point..

[misty14]

Hi Denise

Having three difficult illnesses is enough to cause depression.as well as the pain that they cause. You had a really good reply from Barncliwn which I agree with but can just add have you been referred to a Pain Clinic?. They look at treating pain in a variety of ways, drugs, injections, and they run a support group where you learn different coping strategies and meet people similarly affected. I've made two new friends from going to one. Are you taking Amitriptyline?. This drug can aid sleep as it's a relaxant and has the added benefit of being an anti depressant. Hope you have a supportive GP who you can talk to and you also feel better for sharing on this forum. It helps not feeling so alone. Take CareX

[Denise1219 in reply to misty14]

Yes I am having the injection and pain medication and they help some but I can't help but feel alone and lazy because I laid down all the time

[Pipido36]

Hi, I also relate to this. I have the three disease and more. Im sorry that you feel this way coz I sometimes do. I suffer from depression but at times I feel like I am useless. I have managed to cope by doing what my body tells me to. I try to divert my thoughts of hopelessness to something I can manage to do. The pain is too much but I always find it helps just to push myself and take a walk even if it's just for a few minutes. My GP gave me amitriptyline to take every night this last week and have since noticed a difference. The pain does not go completely but makes me feel better.

It is really hard for some people to understand what you are going through even if you try to explain. By sharing your problem, is a big step to take coz then you will gain more positive information which will in turn help you. I always ask myself why this is happening when I spend days in bed and in pain! I joined a pain management group and it has helped me so much. I learnt to focus on what I can do and not what I cannot do. I think feeling low comes with these diseases.

I hope you feel better soon. I know on here you will get a lot of support. Take care. Xx

[Shadows-walker]

Hi I too relate I am virtual housebound and am only able to go out now when someone is with me , I am 54 and believe I have had lupus since childhood and GP agrees with me and now SS and fibro my body I feel at times hates me , I like you can do very little but I still try , I did a pain and fatigue clinic 3 years ago but have asked to be sent on another one I also have had counciling and have asked to go on a mindfulness course with mind , physical I can do very little but I feel I can exercise my brain and will do anything I can to help myself, at the moment I have decided to Take all the clothes that don't fit and remake them into ones that do do I have a small pair of scissor and I have put all my linen together from black to brown to turquoise to red and I am going to sit in front of my sewing machine and as they" say make do and mend " it's going to be a slow process but next spring I am going to have a whole new wardrobe, I tell you this as I hate the way I look now I have put on so much weight , I had to find something I could do that has a purpose a useful one , one that has a end product I can come and go to as I feel , it's made me feel useful does that make sence I hope you to can find something , for the last 3 years I have done nothing and I can't carry on like this , I had to find a purpose something I could do , hopefully if this works out I hope to help others with this as well , I feel my brain was able to function again when I was put on gabapentin it took away a lot of the fog if that makes sence .

Gentle hugs

Chris xx😊

[Denise1219]

Thanks everyone for the support this truly helps me like I am not going through the pain alone