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Hey Guys,

I'm sorry to come on here and moan, I know I have ALOT recently. But I feel like I'm going to die! I know its very dramatic! But I just feel awful and have no signs of improvement-infact I think things are just getting worse. Went to GP today and he was just like "well its Lupus" and he can't do anything for me. I am seeing my Rheum next week (tues) and I am going to have to go to him with a massive list-infact I feel like I will be screaming and shouting and crying at him and tell him how alone and not looked after I feel. My list will be as follows: Ridiculous costochondritis, still other chest pain-could be pleurisy still(was in hospital with it a month ago), really bad heart palpitations/tachycardia, breathlessness, exhaustion, crazy painful muscles and feel weak (especially top backs of arms and thighs), permanent headache, chills/fever/night sweats, painful tendons, painful and stiff joints (seems like its ALL of them-even my jaw), rashes (including purpura type one), englarged sore glands in neck, nausea, dizziness...ect. And seriously ive had all these symptoms for months. Its getting beyond a joke..and my ESR is 16 at the last count!! :( So whats going on?! My rheumy better fix me..i just cant cope i seriously cant live like this. And im just left to fend for myself you know?!

Sorry for massive rant but needed to get it off my chest.

Love you all xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

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That does sound truly terrible and I've been there and remember exactly how that feels. I hope there's some suggestion that can be made to change things up for you a little bit that will help - or this flare will just fade away for you in the very near future.

(((hugs)))
 

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(((Mooks)))

Is there anyway you could get your rhumey appointment moved ahead? If not thank goodness that it is next week.

Go ahead and rant I know it feels better when we can come here and talk to people who totally understand.:hug: I sure wish there was something I could do for you. Being in that much pain it does look like it is never ending. :(

Sending big soft gentle hugs across the pond.:grouphug2:
Lots of Love,
Lyn

 

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Oh dear Mooks ((((((((hugs)))))))

I'm so sorry that you're going through this. If only we could just wave a magic wand and make it all go away.

Here's hoping the rheumy has some ideas.

Love and hugs :grhug:
Katharine
 

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Hi Michele,

Depending on where your costochondritis is the palpatations may be keeping it irritated. Before I was diagnosed that happened to me and it went on for months. I feel for you, that pain can be miserable.

Tell your rheumy exactly how you feel. Hopefully he can help you.

Take care,
Lazylegs
 

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(((((((((((((((hugs)))))))))))))))) mooks have they given you any stron pain killers for the costo?nothing worse bless, i dont know what meds your on, sounds like you having rotton time flower, mooks i like you have been yuk for well before xmas but i have to say i feel slight improvment with my new immunos....... maybe your meds need looking at, just a thought lovey, just trying to hepl
but as for moaning you maon away ,didnt you know thats my middle name. its such a lonley disease, and its a good job we have found each other, or it would be even worse, i pray that you get a break hnu

all the best with rheumy please let us know
thking of oyu Lin xxxxxxxxx:kiss:
 

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Hi Mooks, just wanted to say Im sorry you feeling so bad, sending you hugs and kisses and you are in my thoughts and prayers.
 

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Hi mooks,
Rant away - I remember that feeling well, that no one is listening. I think the best thing you can do for yourself is to try and keep it in your head that things WILL get better - but that's easier said than done I know. Take it easy between now and Tuesday, and when you see the doctor, be very clear and firm that you need more help, and possibly a change to your drug regime.

Take care :hehe:
 

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Discussion Starter #10
thanks for all your lovely replies. :love::love::love::love::love::love::love: I will let you know how I get on on tuesday-just hope i have the strength to tell him everything! xxxxxxxx
 

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Hi Michele

I really hope the rhuemy has some solutions for you. It might be worth asking about getting steroid injections into your chest for the costo. I got three of them a few weeks ago and they really, really helped. Before I got the injections I was in agonising pain. Now I just have twinges of pain, but most of the time I don't feel it - unless someone presses on my chest. Then I'm yelping!

Take care -

Nellie
 

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Hi Mooks
I'm so sorry this is dragging on so.
Just wondered if you've recently had a plain chest xray? Just so any enlargement of the heart by pericarditis is ruled out. Can cause breathlessness palpitations and general lousiness.
Not trying to diagnose you Michele, but I had this done when i felt that bad.
 

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hi mookds

you poor thing, i'm so sorry to hear that you are in such pain and misery. it sucks right out loud.

i hope you can hang in there till tuesday and i'll pray your rheumy will give you the relieve (and pain meds) you so deprately need.

wish i could do more...
take care
hugs and kisses
 

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Hey Mooks,

You have been going through this for such a long time now, no wonder you need a rant!!!:sad:
I hope your rhummy can get this sorted for you on tuesday. Until then rest, rest, rest.
Sending you lots of gentle hugs.

Elle x
 

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Michelle,
Good to hear from you even if it is a rant lol. Have you been calling your doctor with these symptoms? He has not done anything for you at all. That is not right. I am so sorry to hear that you are still feeling crappy. I do hope that you are on top of the doctor when you see him or her to get you some help with the problems you are having. Keep us posted please.
 

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Hey Mooks,

I just wanted to say I'm sorry to read you are going through so much pain :(

Please remain strong and don't let this get you down - I know its easier said than done, but like me please try :)
 

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Hi Mooks... what a dreadful time for you, hope you feel better soon, I send you my thoughts and lots of hugs... hope you get some relief.
Claire X
 

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Hi Mooks, I am so sorry that you are feeling so rotten at the moment. Just one of those symptoms would be enough, but all of them at once is very tough. I really hope that your rheumy appt on Tues goes well, and that you manage to get things sorted.

Take care

Deb
 

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mooks;542025 said:
thanks for all your lovely replies. :love::love::love::love::love::love::love: I will let you know how I get on on tuesday-just hope i have the strength to tell him everything! xxxxxxxx

Make sure you tell him EVERYTHING so he can help you get this under better control

big hugs and GO GIRL on tuesday

Rachel
 

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Hi mooks

sorry to hear your having a tough time.The breathlessness do you get from just talking? If so ask for referal 4 RHC LUNG HEART SPECIALISTS could be you might have PH.

Dont put up with the pain like I did .Wasnt till I was in hospital this lovely pain nurse came and sorted me. There are lots out there, just getting them when needed. I use a heat pack on my shoulder to ease the pain, Paracetamol,phentinol patch and oramorph,amptitriptaline at night. I was off for a while, but now Im Flaring again. Im in hospital 2 weeks time for Retoxamab IV to knock out my B cells.
 
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