Spoon, spoon, where for art thou spoon

I'm starting to get frustrated with my symptoms piling themselves on top of me, i figured i was getting some control on them hence my lack of posting. But in the last 2 months things have escalated. My rheumatologist saw me the other week and said the fated sentence every auto immunie dreads "well you look well" hmmm considering iv hardly slept, my joints are getting worse and the lovely dizzy spells and vomiting have made a return i don't think i am better but thanks for the assumption and down right closed minded way to voice it, maybe I'm being touchy but ahh well I'm allowed :P

new symptoms have turned up too, nose ulcer and hair loss, fandabedoze.

rheumatologist seemed to fancy concentrating on my "psychological issues" though, I'm on antidepressants and they are helping slightly but she didn't want to listen when i told her that I'm not depressed its these conditions making me this way, i have no need for your self help book and i certainly don't need cognitive behaviour therapy thank you very much mrs judgemental.

soooo I'm not sure where all my spoons have gone but my doctor's and rheumatologists lack of help and support have probably got a teeny bit to do with it. I shall plod on nevertheless

5 Replies

  • That doesn't sound right, though. If your symptoms are increasing in number, or intensity, or both, your treatment needs adjusting. All these symptoms are the body's way of telling you there's activity there that needs to be kept in check. I would go back to them and ask for options, leaving it alone will not calm it down, I don't think. And as for psychological issues, tell them you'll consider those once they've sorted out the physical ones. The arrogance of these doctors, it is unreal!

  • Iv got the doctors on Wednesday but they are usually as much help as a chocolate fire guard :/ its rather annoying. Iv told my rheumy that things are getting worse and she thinks physio will help, granted it may help some things but i doubt the insomnia and sickness will stop. I also told her that my hand tremors and other spasms are getting worse but she snubbed me and told me that isn't a symptom of lupus or any mixed connective tissue disorder, hmmm. I got sleeping tablets off my doctors but only 2 weeks suply, i am going to see if they will give me weaker ones since she made it very clear she wont give me more even if i do need them.

  • Can't you change doctors, this one is not helping you at all. The tremors etc - how can physio help with that unless it is a musculoskeletal issue and if that was the case, what test results is she basing that on? Sounds like she wants an easy life. How these people sleep at night, I don't know. But then I suppose that could be the trick for being able to carry on with this profession - distance oneself tobe able to cope. Still, there is distance and there is indifference, your doctor's attitude suggests the latter!

  • Hi, unfortunately many of us lupies look well due to the rosie glow thanks to the butterfly rash which often comes up with each flare so as we feel worse people think we have a healthy glow.........WRONG! yes we know that but unfortunately it is not common knowledge that there is a reason for the healthy glow on our faces, on many people it would be good but as we know for us the opposite is true.

    I'm sorry to see that your symptoms are getting worse and piling up on you loubie I sincerely hope that you have not had an escalation of any more symptoms since posting you poor thing. I too have suffered hair loss and have now been bald for nearly two years, it is not the first time and each time it has come back really nice but a different colour so I keep wondering what it will do next. I save a fortune on hairdressing, shampoo, conditioner and styling products etc. and have some great bandanas - I am a biker so have the added advantage of not suffering crash helmet hair either unlike most of my friends. ;-) I am not wishing it upon you but seeing that you already have nose ulcers, if mouth ulcers follow I have found a very effective remedy available both over the counter and on prescription - Hydrocortisone 2.5mg muco-adhesive buccal tablets they work like magic!

    A lot of doctors have their hands tied with how many of certain sleeping pills they can prescribe as some people have become to them so unfortunately we all get treated the same thanks to "suits" who say nobody can have more than fourteen day's worth at a time. It also seems that many doctors think that people with long term illnesses are more prone to having psychological "issues" so make an effort to address them.......hello - look after the physical stuff and the head will be fine!

    Keep plodding love and I hope that elusive spoon turns up! lol ;-)

    Madmagz x

  • If i changed doctors it would then be a bus ride for me to get seen instead of a short walk, even the walk is a challenge as you lupies will understand lol i knew the hand tremors were a symptom coz one of my friends on here has them too but allas the idiots think they can fob me off with all this nonsense. My nose ulcer went after a day lol was really strange! And my weight went from being just under a size 12 (which i worked so hard for) to to right bk in a 14 over bloody night! It's all swelling and water retention but again they wont give me help with it :/ luckily iv got loads of hair so having it fall out is probably a blessing in disguise hahaha. Xxxxx

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