[alimonkey]

I'm really struggling tonight. I'm in absolute agony - my feet are literally killing me and my neck is numb. My skin is so hot and prickly and I have my usual neck rash. My face looks very puffy, and my cheeks are all red (I don't have a raised rash, just bright red, sometimes it looks almost purple).

I'm so tired I sat and cried for about an hour earlier. I just can't copy any more. I was diagnosed with lupus last week and I have to wait another week to see my GP for medication. I've been taking over the counter pain killers, but they have zero effect. I just want to curl up and go to sleep for a week until I see my GP. Then I suppose I have a long agonising wait for medication to work. I just can't deal with this any more, I feel so terrible and I'm feeling very low.

 

[lin]

Alli couldnt you go back to see your gp, im sure he can give you something whilst your waiting you cant go on like this, i know just what your saying and how your feeling, and its horrid,

please get back and see them, let us know sedning you hugs Lin xxx

 

[alimonkey]

I'll give them a ring in the morning but I got the impression when I made my appointment for next Thursday that they were fairly booked up. May go and talk to the pharmacist tomorrow see if he has any advice. Think I'll go and have a cool bath before bed - my skin is literally on fire and I need to cool down. I've taken my temperature and it's normal. So weird, but it's one of the symptoms I seem to have.

 

[keebler]

(((Alimonkey)))

When you talk to your GP's office, let them know how bad it is going for you.
I think they do leave some wiggle room for patients that need to be seen. That is how it is at my GP's office.

I hope you get to feeling better soon.
:grouphug2:
Lyn

 

[Mrs M]

Hi Alli sorry to hear you're not feeling too great.

I hope you can get in at the docs sooner as you obviously need some relief from the pain. Waiting a week for an appointment is just ridiculous.

Sending you a gentle :hug:

Take care
Mrs M x

 

[alimonkey]

Went to see the pharmacist today and got some different pain killers to try, it has eased a little tonight. The cool bath worked wonders too, will have another one tonight. Rang the docs and they weren't much help - plus last time I went the GP basically said they couldn't really do much until the rheumatologist had investigated my symptoms and didn't want to prescribe anything until they knew what they were dealing with. If I get to the GP on Thursday and find out the consultant hasn't written to them yet, I will literally go mad.

 

[Barb G]

I hope you are taking photographs of your visible symptoms ---- very important ---- sometimes they don't see you even when you're right in front of them but they rarely fail to acknowledge the photographs!

 

[Pink Pearl]

Barb has good suggestions. Another suggestion is to keep a journal/diary of your symptoms. Just saying that you are in "pain" is one thing, another is to see that this has been at a high scale for weeks. Rate yourself on a 1-10 scale and note it continuously. If you have relief from a cool bath/shower, then note that too. Either write this out to take to your medical appt, or take the journal with you for you and the doctor to go over together. I find that it works well for me to type up what I call "love notes" and give them to the doctor. I include symptoms, energy level, temps or the lack of them, all sorts of things. It helps to make the most of your medical appt.

hint: when I was having a high level of pain, not relieved by other means, I talked to my pulmonologist who is my primary doctor. I asked if he would take on the responsibility of being the only doctor on my team who would write narcotic perscriptions. That way, I didn't have to go from doctor to doctor to get the pain relief I needed. [I felt like I was "beggaring" my self asking for narcotic pain relief.] This way if there is a drug review, all the info is one place, and one doctor.
This took all the pressure off the other doctors, and off me. A couple years after we had this disussion, the state medical board came out with this recommendation.
Sally

 

[alimonkey]

I hope you are taking photographs of your visible symptoms ---- very important ---- sometimes they don't see you even when you're right in front of them but they rarely fail to acknowledge the photographs!

Great idea, I did take some photos, but in the end I didn't need to show them as I was slap bang in the middle of a skin flare when I saw the rheumatologist last week. My skin goes bright red in big strawberry like patches, especially my cheeks and neck, and I also had two lesions on my neck. I've been having the lesions for years - on at least 3 occasions I went to the GP with huge patches (including one the entire length of the back of my leg about 5 years ago, and last February I had a big stripe down my shoulder) and I've been told it was shingles, hives, allergy, you name it. All blood tests and swabs were negative for shingles, no other explanation could be found. I had allergy screening and the only positive test was for dust mite, which generally causes respiratory problems, not skin rashes.

The rheumatologist said that based on the way I presented, my medical history and my bloods, I have lupus. No evidence of any organ problems, the main symptoms for me are joint pain, fatigue and occasional rashes. The rashes I've had for 20 years. I've also had plurisy a couple of times, and heart palpatations (a cardiac consultant asked me how many Es I'd dropped, because there was nothing that could explain my symptoms and abnormal ECG, nice huh? I was monitored as they thought I was going to have a heart attack, I was 30 at the time).

So while I'm a bit shocked at the diagnosis, I'm kind of relieved that I'm not going mad cause that's how I've been feeling for the last year. A few years ago I kept going to the GP saying I was tired all the time, I had anaemia on one occasion, but other than that thyroid tests etc were negative. They told me I was just depressed and prescribed anti depressants. Maybe I was depressed, but I think chronic fatigue was my worst problem, which I suppose in itself can make you depressed.

 

[alimonkey]

The diary is definately a good idea. I had a really frustrating hospital appointment last year when this consultant was asking me why I was there. I explained that I had been ill in February with a rash and a high temperature, and had felt tired and unwell since, and then woke up with numb hands one day in July. He asked me to keep a temperature diary, and of course the whole time I did it, it was normal. So he said there was no evidence of it, despite the fact that when I had my rash I had a temperature of 38.5 as taken by my GP. It's like looking for a needle in a haystack!

 

[nettyunicorn]

hi ali i'm sorry your having a tough time right now! i just thought you might try ringing your rhuemy and ask him or someone from his team to phone your GP and ask him to prescribe the meds you need! Also do you get copies of results and letters from you rhuemy and any other medical professional. that way you could take your copies with you when you see another doctor!


just a thought!

take care

nettyxxxx

 

[alimonkey]

That's the thing, they seem to be really secretive. I seem to have to drag everything out of them. The rheumy ran 6 blood tests last time I saw her, but didn't tell me what they were for or what the results were. The only thing she would say was that all the inflammation markers were present in my results. I was seen 3 times by a consultant last year at outpatients, that was when it was discovered my ANA was positive, but my regular GP didn't even tell me, and the consultant didn't tell me much (he certainly didn't mention ANA, just inflammation) and none of them told me the level (I only found out by looking at my GPs screen when he looked up the results on my computerised record). I feel a little bit in the dark, and most of what I know about the illness I've found from forums like this and healingwell.

 

[Jules123456]

Hi
I hope that you are feeling a bit better this morning but I know that it takes time. Oh bless you, your story sounds so like mine and I found out things when I went to the GP and I was looking at the screen and there was a copy of a letter from the hospital, thing is they had got things wrong on there about which treament I had refused, I was furious but seen as I had been having a sneaky look what could I do? My doctor has been very jargonish with things and unfortunately people like me don't understand.

I have taken lots of pictures to the hospital over the last two and a half years just so they can have a record of all the places on my skin affected, one of them when my face swelled really badly was so embarrasing but I think even if it was put on Crimewatch no one would have recognised me:rotfl: Strange that is always the picture they look at!!

I am really lucky that my doctor at the hospital has a superb secretary, about the only superb thing about the treatment I feel I have had but she is very good if I ring and ask her to find something out she will track down the doctor and ask for me. If I went to the reception staff I may as well just expect answers or info sometime never.

I hope that you can get some medication soon to help, it is just awful to be suffering so much and knowing that not much is going to help that you can get over the counter at the chemist. You are right if there is no news when you go back to the GP you kick up a stink and a big one.

I see you are in East Yorkshire so not too far away from as I am South Yorkshire!!

Sending you big gentle hugs and hoping that you are feeling better really soon

Jules
XX

 

[Katharine]

Hi Ali,

I hope you're feeling a little brighter now?

Just wanted to say that you have a "right" to have copies of any test results and you should keep a copy and have your OWN file. It can come in very useful further down the road.

Katharine

 

[Jules123456]

It's funny you should mention that Katerine, I totally agree as when I was sat in the waiting room last Tuesday I was reading a sign that said just that and that any copies of your notes that you wanted would be made available. It said you should ask the doctor when you saw her or her and they would arrange for the copies to be taken and sent to you.

Jules
XX

 

[dixy]

Hi Jules

just tell DRS u would like copies of letters and treatments that you are having even if you dont understand the terms.(U can pick up what it means) then you can always ask. Also blood tests I too have loads taken I always ask and even if I feel a bit silly asking I still do there is so much to learn. Its good to know as it is your body

take care Dixy

 

[alimonkey]

Feel a little brighter this morning - I got some 300mg aspirin and I've been taking that with paracetamol. Just got back from the library - got Dr Daniel Wallace's Lupus book. I've started reading it, hope it will help me understand what's going on a bit.

I always feel a bit awkward asking for copies of results etc. Even when I've asked about specific tests they don't seem to want to tell me the results. Do they think it's because I won't understand, or it won't mean anything to me? Or are they worried I'll look them up on the internet? Who knows, I'll talk to my GP properly on Thursday.

 

[dixy]

Hi Ali

Yep Ive just bought my own copy of the lupus book whish I had found it 3 years ago lol. You could try giving a copy of your list to the doctors to read then let them explain to u in simple terms. (this is possible lol)

take care Dixy

 

[spellbinder]

:wavesmile: hi ali

the lupus book is great, i got mine about 2/3 years ago and i still reference it from time to time. i even highlited some stuff.

i read my chart sometimes while i'm at the doctors office and if something catches my eye i will ask for copies. they are your records.

hope you feel better soon, watch the asprin intake as it real hard your stomach.

hugs and kisses

 

[Pink Pearl]

Hi Ali, welcome to the board.
Yes, you MUST get copies of your lab results. If you aren't sure about them, then either google for lab results, or go to the LFA or UK web site and see what your normal values should be and what you need to be aware of treating. National Institute of Health, NIH in the US, is also a superb site as is NIAMS-a spin off of the NIH. I'm not sure about the UK, but NIH provides literature for free here in the US. I really like their booklet on sources of medical information. I'm sure you can get that info on line from their web as well.

I was taking pre-req's for nursing school when I got ill and my anatomy & physiology book was a huge help explaining what and why at the beginning of my journey with sle. The DuBois Lupus book is also superb, but it is more a medical textbook than general public reading book. The Dr Wallace book is superb on breaking things down for normal reading.

Never stop asking questions. You will always learn more as you will go on this journey of lupus.
Sally