What more can I do?

[lillyanne]

Today I'm feeling absolutely rotten. Rash on neck and swollen glands, sweating, swollen lower back and pain everywhere with a pounding headache and stiff neck. Ive slept all day and still feel tired. I went to rheumy this week and he honestly doesn't seem concerned. He took bloods and is sending me for physio for my back. How do I get it through to him that I feel SO ill because he just seems to brush me off. I'm fed up of trying to get some support from the Docs (although my GP is more understanding). I went to the neurologist as well because I have a tremor in my right arm, and he just said its stress related, I tried to explain that I am in terrible pain in the affected arm and my neck and I feel that could be the problem(I have a bulging disc in my neck) but he just seemed to think its stress and that's it. Gave me sleeping pills (which I haven't taken) and told me to carry on with the antidepressants. I just feel they are scooting around the problem rather than helping me to deal with it. Sorry for the rant but feel like crap and had a gutful of not being understood. xxx love to all and I'll probably feel better tomorrow, just having a low.xxx

[field]

hi lillyanne,

Sorry to hear you are feeling so poorly. Unfortunately, sometimes the people who are supposed to be caring for our health can be very insensitive to our reality of living with our illness. They also are in the habit of blaming unexplained symptoms on depression, because they don't want to take the time to find the root cause. I personally don't know how depression can cause your disc to bulge or how antidepressants can resolve that problem, that's a new one for me.

It sounds to me like your might be in the middle of a flare and need to take it easy for a few days. you haven't said whether you have lupus or some other immune disorder or what other medications you are taking. Are there any other doctors in your surgery you can see to get another opinion?

Also, I don't know which antidepressants you are taking, but I have a friend who was placed on antidepressants and they caused all her joints to become inflamed and extremely painful, even though she doesn't have an immune disorder, so I would check that it is not a side effect of that medication that is causing the problem.

I hope you feel better soon.xxx

[lillyanne]

Hi Field. I've been diagnosed with Lupus and Fibromyalgia. I think I am having a flare at the moment because I feel really ill, and I just want to sleep. Ive slept for about 6 hours today and am now off to bed because I feel exhausted and yet the Doc gave me sleeping tabs? If I take them I'm afraid I won't be able to function at all! I am taking fluoxetine anti depressants and Ive been taking them for about a year and a half. I started taking them after my Mum died. Thanks for answering my blog. Its just nice to get things off your chest now and again I think.xx

[Purpletop]

It winds me up no end to hear how we get prescribed antidepressants that easily. Not only because these pills are not without problems in themselves but because in certain circumstances they are simply prescribed out of prejudice and for want of an easier life - something along the lines of 'let's give this hysterical woman something to calm her down and hopefully she will go away for a while'. It would be so much easier if the doctor simply accepts he/she doesn't know what to do next and make a referral to another specialist or just say to the patient 'I'm sorry, I have done as much as I could, this is beyond me, you need to see someone else". I'd rather have that.

I had a tremor in my right thumb and my GP said to leave it few days and see if it goes away. The thing is, it did but that's because by then I finally got to see a rheumatologist and he put me on steroids.

Next time you see your rheumatologist ask him to explain to you why you have these symptoms and why he believes that the antidepressants or sleeping pills would help. It is true that some antidepressants are used for pain relief too, so that might be why you've been prescribed them but he needs to take you through all this and agree treatment with you, not just write the prescription and get you out of his door.

If you go to the neurologist again, ask him why he believes that stress is an issue here and not something to do with inflammation - has he done any tests to support his view? And if he hasn't (as I doubt he could) then suggest that you'd rather not focus on something as elusive as stress and focus instead on how lupus seems to be impacting you through the physical symptoms.

It is such a struggle sometimes, it is unreal, I understand what you're going through. I would go back to these guys and push them for better assessment or explanation, you need to have all the facts and the pros and cons of any treatment you're being prescribed or not prescribed, otherwise you'll be suffering there on your own, none the wiser as to whether you're doing the right thing.

Good luck.

[cynamonspice]

Im feeling you guys! I have many similar symptoms to you, and now my kidneys don't seem to very happy either, but hey "it's just stress!" If i have to hear that on more time i swear i will literally scream at them. I bought urine dip sticks to proove this, i had to do this because they are so arrogant they have become unable to perform their job as a GP. I shouldn't have to do this to proove i'm ill!, now you have to proove you're ill, just telling them is not suffice anymore. I mean really it's come to this! where patients have to buy equipment to perform their own tests, because DR's just couldn't be wrong could they! Sorry for the rant, but it's just ridiculous, and Dr's just seem to be getting more and more dismissive and arrogant.

[brave]

I feel the same ;(( and im flaring weekly ,it sucks ,bloody doctors ;(

[Catlady56]

I 'm so sorry you are feeling particularly unwell at the moment. Anyone would be "stressed" when having a bad flare up. Then when you do feel better you are waiting for the next one to hit. Don't think antidepressants are the answer, or sleeping tablets. You need a way to deal with the pain - ie physio perhaps? and some positive treatment for your neck disc. I went out in the lovely sun we had (briefly) last week. It was great and I enjoyed the warmth. Paid for it next day with itchy skin of course but sometimes you just have to trade off. Lupus is not "who" you are. You are still you.

[Hidden]

Nightmare. I've found physio to be unhelpful the 3 times I've been sent. Its all about exercise and not hands on. My absolute fav is an oesteopath. Immediately she spotted what was wrong with my husband and said he needed further investigation as exercise wouldn't help only cause more damage, though the physio hadn't picked up on this. The oesteopath wrote a note for the gp and my husband was referred to a consultant, the x ray shoed nothing but the MRI confirmed the oesteopaths diagnosis. Yes, it means paying about £30/£40 but in that initial assessment they may be able to see where the problem lies and you can go back to the docs with something concrete like cynamonspice said we're now having to clinically prove ourselves more and more these days, shameful. Xx

[lillyanne]

thanks for the comments everyone and I'm taking everything on-board that you've said. I think the problem with me is that every time I have an appointment at the hosp, I think they are going to help but it just seems to be a waste of time because I always come away feeling let down as no one seems to care how you're life is affected. They don't care that you've lost your job, or that you can't cope with looking after the family. I'm feeling a little better today although still sweating and tired. The rash on my neck has turned into big lumps, as it did last year, and a biopsy showed Lupus, so I think I'm gonna have to go on the steroids. I hope my G.P can give them to me and I don't have to drag my backside to the hospital. love to allxxxx

[JJKANE]

Hi , I have Fibro, Lupus, sjorgens, raynauds, and connective tissue disease with jessners lymphochitic infiltrate. I have been bed bound for about 15 months with just the odd day of relief.

I am depressed and my GP is now helping get mental health care as one can not divorce the physical from the mental .

I have had 15 years of pain, lost both kneecaps and my son whom I adore , but have been asleep whils he has grown up.

I have a fantastic GP and would not be here if not for him.

JJ Kane

[lillyanne]

I have to say JKANE that I find my G.P a lot more helpful and understanding than the specialists I have seen.