[Rosielj]

Hi everyone, I haven't been on the forum for a while now, but could do with a bit of support.
I have now been diagnosed with Sjogren's syndrome as well as lupus.
I am back with my consultant and last time I was there they did the usual bloods and the results must have been passed on to my GP because about eight weeks after my visit to the rheumy my Dr phoned to say my iron levels were very low. He put me on iron and folic acid tablets which I tried to take, but they made me feel so sick. I went back and he then sent me away with a bottle of iron medicine, and to be honest it has just sat in the cupboard since.
I don't know whats wrong with me, its like I have lost the will to fight this disease at the moment.All I do every day is get up, get my two boys to school and then just lie on the couch slipping in and out of sleep all day and worrying about the thought of having to make their tea. When I have made their tea I just feel so relieved, and then I am back on the sofa.I have to walk to the shops sometimes, and when I get back I feel utterly exhausted and my heart is pounding.
Every time I have been to the clinic or to the GP's and had my urine checked there has been blood and protein in it, and every day I am in utter agony with bladder pains, its like having permanent cystitis which never goes away. Sometimes there are such large amounts of blood that it is visible.
I had a bladder and kidney scan and haven't had any news on the results, I am never sure who I am supposed to phone, the hospital that did it where my clinic is, or my GP
I just feel like I am sick of it all, and can't be bothered chasing results anymore. I know I should be going back to my Doctor because this iron thing has been going on since before Xmas and I have had no treatment (my own fault) I hate to think what my iron levels must be by now, but I just can't be bothered walking the half mile to the Doctors.
I am usually so active despite my illness, and people are amazed by how busy and positive I usually am.But right now I feel my fight has gone.Has anyone else felt like this?And how do you snap out of it? Any advice welcome!

 

[elisabethm]

Hi Rosielj there must be something in the air some of us are the same.I have been on a downer since last week.But this is why we have this site so we can support one another if you need you can pm me so keep your chin up and you will get there :grouphug2: Elisabeth

 

[julsie]

Hi Rosie,
sorry you're feeling so low,I think a lot of people here have felt the same at some point if only just because of fatigue.The anaemia itself won't be helping,I would say try and get some iron in you even if it's the yucky medicine!it takes a while to get your iron stores up but if you don't you might end up having jabs in your backside and you don't want that
I know when I've been anaemic I've started to feel much better after starting iron tabs.
All your test results should be forwarded to your G.p and if not,they should chase it up and do the work,not you.
Don't feel alone,most days I stress about doing the tea and feel relieved that it's done afterwards so I can sit down!hope you feel better soon,
Julsie

 

[karen.w.]

Hi rosie

I am sorry to hear you are feeling low :sad: we have all been there & sometimes it's hard to snap out of it no matter how hard we want to...I think it's all part of living with a chronic illness & we are only human after all.

please try & see your doctor about your iron levels rosie as low iron levels will make the fatigue worse.
have you much support at the moment?maybe talking about your frustrations would help.I know I tend to keep quiet about things for fear of depressing everyone but then it just bottles up inside & makes me feel worse :sad:

Don't be too hard on yourself rosie,we can empathise & we are here for support.big hugs to you :hug:
take care of yourself..karen

 

[Jirel]

I really sympathise. When I was only slightly anemic and still working I used to work at corners in the hallways and think that it would be a good place to just lay down and die because I was so tired. Once I got my iron cleared up though I felt a LOT better. I can't even suggest the stuff I took though because I don't think you are in the U.S.

I think you need to call the doctor that ordered the test to get the results. all my labs refuse to give me the results (unless I want to come physically pick them up after they are done) but tell me the docctor that ordered them can give me the results.

 

[Maia]

It's a bit concerning to me that you've had blood/protein for months but nothing has been done about it besides a few scans? Kidney disease by itself can cause low iron, and having that much blood in your urine is causing you to lose even more.

I think without a doubt that you must get your health attended to before your feelings/capability of doing things will improve by any significant margin. If you don't have the fight in you to take it on right now, can you have a loved one do it for you?

My tips for taking iron would be to take a children's chewable with iron in it at every meal, and be sure to have some vitamin C with it like orange juice because that helps absorption. Look for cereals with high iron fortification and eat that for 1-2 meals a day (they're commonplace here in the US at least...). Eat red meat with OJ too!

Of course, the pills would be better as they are stronger but I know all too well how sick they make me so I improvised this plan for myself. If dietary changes and supplementation don't work then the disease itself is probably causing the low iron and it needs to be treated more aggressively.

I think with your health problems, it will be very difficult to just "snap out of it". But you have to take some action first and quite possibly have someone help you to take that action. It's my firm belief that motivation does not magically happen - it happens as a result of action - and action produces motivation. But you need to attend to your health first.

Take care... (((hugs)))

 

[Rosielj]

Thank you everyone for your encouraging messages, its really good not to feel so alone with all this.
Unfortunately I have nobody to help me with all this, I have older children who live away, and the two younger boys at home.I have no friends whatsoever where I live, or elsewhere really!
I know I have to get a grip on this and sort myself out,the way I feel right now is not good.
My consultant holds his clinics today and I think I might give them a ring and ask to bring my next appointment forward.I cannot go on day after day with so much pain in my bladder, it makes you not want to wake up in the morning as there is only pain and tiredness to look forward to.
I will definitely try some children's iron tablets until this is sorted-thank you for the suggestion.
Next time I post on here I will hopefully have some answers, and will be feeling more positive!
Love to all
Rosie