I really hope things start changing in the new year. I am waiting for new medication as I was diagnosed with fibromyalgia last month. I was diagnosed with lupus in February 2017. I am currently not on any medication at all Hydroxychloroquine didn't help me and made me worse. So have I got fibromyalgia and lupus or just fibromyalgia. I have been so depressed these past few weeks and grumpy/snappy. I spoilt Christmas as my e.s.a. Was stopped in November and now I am being faced taking d,w.p. To a tribunal. Having no money, no meds has really affected me and my mood. I have had no correspondence from the hospital confirming the diagnosis and meds to be taken and neither has my doctor. I was diagnosed on 13th December which wasn't the Christmas period. I wasn't given a letter to give to my doctor so I thought it would be faxed to them. I am back to square one.
Sorry for moaning, I just feel so low and just getting over a stomach bug.
Xx
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Mandypandy1969
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Hi. I am in Hydroxychloroquine and I don't think it has done anything for me .. online it says you can't be on it for longer than 5 years and I have been in them about 7 year I think ... I hope you get answers and medication soon that helps xx
They are supposed to help me with my sleeping. But my sleeping goes in stages . Sometimes I sleep great then go through months of not being able to sleep other than that don't see a difference lol xx
It sounds as if you are having a really difficult time. No wonder that you are feeling down. I’m sure things will get better once your doctor has received the correct information and works out a plan in order to help you. This is an ideal site for letting off steam. Everyone is so helpful and supportive. I hope that things start improving for you very soon. Take care. Xx
Thank you. I am finding I have got a very short fuse with people too, especially the people I am close to which is only 2 people. I don't want to do anything or go anywhere. I think people think I am being lazy and I suppose in a way, I am as I have let everything get on top of me. Xx
You are not being lazy! You are feeling very down and finding it difficult to cope. Try to explain to those closest to you how you are feeling and that you really don’t like being snappy with them. I’m sure they will listen and try to understand. I do hope that your mood lifts soon but you could always discuss this aspect of the illness with your GP too. Xx
it's hard to explain to the old school as my mum just expects me to get on with it. doesn't help because I already have bipolar and personality disorder. my docs don't want to know either. they see me as a hypochondriac. x
I can understand you feeling low especially with the stress of ESA being stopped. Unfortunately, sometimes it takes ages for these letters to come through. If nothing happens in the next week it might be worth having a word with the specialists secretary as sometimes it may have been sent but got lost in the Christmas Mail.
Hope when you do get the new medication it helps you.x
Oh dear I'm sorry you're feeling so rough, I'm in a similar situation I was diagnosed with fibro last month & I was awaiting the letter from the consultant to my GP so I could sort out my medication, as it hadn't arrived I emailed the rheumatology dept at the hospital & they emailed a copy of the letter to me & my GP so now it can be sorted out, maybe you could try that approach? Take care x
I feel as if youve just summed up my life in how you are feeling. Exception being my GP has had on all sorts of meds for years treating different symptoms. Finally joined the dots myself after speaking to a female friend with fibro and told my GP and now going to see rheumatologist on 8th of this month.
I am the saw I’ve Hashimoto panic disorder waiting to go hospital as I’ve awful trouble nose and mouth raw inside nostrils sores etc I mouth my gp thinks I have some type of tissue disease
Would you mind if I ask your symptoms I think lupus mabe but who knows so fatigued like walking through sponge jelly
I have chronic muscle aches, weakness in my legs and arms. a lot of pain in my back, neck and shoulders. find everyday tasks even showering hard work as I ache all over. the heaviness in my limbs is awful.
I was first diagnosed with lupus as I had a high inflammation blood test. went on meds for lupus which didn't help. visited rheumy clinic 3 weeks ago and was told fibromyalgia. not on meds yet as doc hasn't received a letter and neither have I. I don't know if it's one or the other or both which it can be.
No haven’t been to a rheumatologist my gp just keeps saying no inflammation but I’ve got something I think I’d rather b dead than live like this I’m sick of it I’ve lost my job also and I look like s..t permanent black rings under eyes got so fat as well
Thanks for your help I’m I to old for lupus I’m 53 been not right for two years
I haven't been right more noticeably these past couple of years. I put 3 stone in all of a sudden a couple of years ago very quickly. I hate my body. I used to have a nice figure but weight has piled on my stomach and I look pregnant. it's not flab, it's hard. so depressing do you aren't on your own. x
My stomach is exactly the same .honest I feel as if I’m not me if u know what I mean I used to be slim like 8 stone 10 now I’m 10 stone 6 brutal
I never go out because I feel crap so I don’t bother now . No I have my husband but he’s not well he’s secondary progressive ms I must of been at the back of the bus when the good luck was handed out
But sure I’m not the only one miss work my colleagues used to b account manger on large beauty account in boots
I am single and don't go out. don't have the bloody energy to go out plus I am self conscious of my big stomach. I ballooned from 10 stone to now 13 stone and all on my stomach.
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