[flamenco2]

Hi,
Im new member just joined this site. Seems extremely helpful and from reading the posts (a great number of people are suffering and in deep pain) - like myself. Will now try and condense all about my health stuff (but have lots to tell) :-

I had bad trauma (horse riding accident 21 years ago) years of tests for this and that then paid privately 5 years later diagnosed by a rheumy as having FIBROMYALGIA. Years of soreness etc etc (you all know the tale). Have lived a horrible existence with pain and stuff. Never had meds only the odd neurofen or paracetamol, had muscle creams didnt help !
Last year things changed, started burning up on face, cold hands, skin, horrendous fatigue. I kept asking and my own doctors did the usual BOG STANDARD BLOOD TESTS. (NOPE - all kept coming back OK). Kept telling them I felt shockingly ILL and something wasnt RIGHT.
Now developed pain excrutiating in right side rib cage.
Up to date had blood tests for FBC, CHOLESTEROL, DIABETES, ETC. Had chest x-ray, bladder and kidney scans. lymph check etc. They said chest x-ray fine, so is kidneys bladder not anaemic, no diabetes - I WAS UPSET COS DONT FEEL MYSELF OR WELL AT ALL.

I funnily enough have been under an ENDOCRINOLOGIST 20 odd years, have polycystic ovaries and cant have kids (sad part and really cant dwell on IT EITHER , have never dealt with childlessness and will take it to the grave with me - sorry to be dramatic) maybe someone on here can support me on issues) ? It has made me a bitter person (over that sort of stuff) and that aint like me - no way.

Now under local hospital the Rheumy requested all those tests.

He said I have FIBROMYALGIA, REYNAUDS IN HANDS, SKIN ISSUES, THE RHEUMATICS "IN THERE" and wait for it LUPUS (albeit fairly mild).
The ANA blood test - is POSITIVE. DNA - negative. Im not well up with blood works so no idea.
Ive started on PLAQUENIL TABS, ONE TWICE A DAY. go back see him on
14th May. Feel awful sore, dont sleep wake up totally paralysed in agony cant turn over. horrible dreams, he said ive chronic fatigue.
I now really seriously mithered. Not in financial position to pack in work (work fulltime always have had to even being ill). I feel cant do this 5 day stuff. 3 days be better. These benefits, no idea bout it. seems I cant get ANY BENEFITS. Work dont understand and its a NIGHTMARE. Wheres it gonna all end for me ? in a total QUANDRY bout working life. No way can pack work in either.
Sorry to bore you all, have more to tell, but atleast said alot of it now !! LOL
Any replies welcome, I would love to make new friends on here, for support etc. Means alot to me. I am always here for you all too.
Hugs Diane (Di) XX

 

[Sam M]

Hi,
Im new member just joined this site. Seems extremely helpful and from reading the posts (a great number of people are suffering and in deep pain) - like myself. Will now try and condense all about my health stuff (but have lots to tell) :-

I had bad trauma (horse riding accident 21 years ago) years of tests for this and that then paid privately 5 years later diagnosed by a rheumy as having FIBROMYALGIA. Years of soreness etc etc (you all know the tale). Have lived a horrible existence with pain and stuff. Never had meds only the odd neurofen or paracetamol, had muscle creams didnt help !
Last year things changed, started burning up on face, cold hands, skin, horrendous fatigue. I kept asking and my own doctors did the usual BOG STANDARD BLOOD TESTS. (NOPE - all kept coming back OK). Kept telling them I felt shockingly ILL and something wasnt RIGHT.
Now developed pain excrutiating in right side rib cage.
Up to date had blood tests for FBC, CHOLESTEROL, DIABETES, ETC. Had chest x-ray, bladder and kidney scans. lymph check etc. They said chest x-ray fine, so is kidneys bladder not anaemic, no diabetes - I WAS UPSET COS DONT FEEL MYSELF OR WELL AT ALL.

I funnily enough have been under an ENDOCRINOLOGIST 20 odd years, have polycystic ovaries and cant have kids (sad part and really cant dwell on IT EITHER , have never dealt with childlessness and will take it to the grave with me - sorry to be dramatic) maybe someone on here can support me on issues) ? It has made me a bitter person (over that sort of stuff) and that aint like me - no way.

Now under local hospital the Rheumy requested all those tests.

He said I have FIBROMYALGIA, REYNAUDS IN HANDS, SKIN ISSUES, THE RHEUMATICS "IN THERE" and wait for it LUPUS (albeit fairly mild).
The ANA blood test - is POSITIVE. DNA - negative. Im not well up with blood works so no idea.
Ive started on PLAQUENIL TABS, ONE TWICE A DAY. go back see him on
14th May. Feel awful sore, dont sleep wake up totally paralysed in agony cant turn over. horrible dreams, he said ive chronic fatigue.
I now really seriously mithered. Not in financial position to pack in work (work fulltime always have had to even being ill). I feel cant do this 5 day stuff. 3 days be better. These benefits, no idea bout it. seems I cant get ANY BENEFITS. Work dont understand and its a NIGHTMARE. Wheres it gonna all end for me ? in a total QUANDRY bout working life. No way can pack work in either.
Sorry to bore you all, have more to tell, but atleast said alot of it now !! LOL
Any replies welcome, I would love to make new friends on here, for support etc. Means alot to me. I am always here for you all too.
Hugs Diane (Di) XX

Hi Di
I know how scary and lonely you must be feeling but try and keep positive. This is a great site lots of advice and support which i hope will help you. As you have seen im in pretty much the same place as you and it just goes on and on............... hopefully we,ll get there in the mean time keep in touch ok .
Sam x

 

[Katharine]

Hello Di and :welcome:

I moved your post to start a thread of your own, that way your introduction doesn't get lost at the end of someone else's thread

I hope you'll enjoy being here. I think that you'll find a lot fo support, advice and a good few laughs.

I'm so sorry that you've had such a long and arduous journey before diagnosis. Hopefully now, with more adapted treatment you will start to get some of the releif you deserve.

Plaquenil is an exellent med with few (or no) side-effects. It is disease modifying and should help reduce the frequency and severity of flares. Its "downside" is that it can take a long time (3-6 months usually) to kick in and have any "noticeable" effect. You have to be patient and believe in better things to come.

If plaquenil was found not to be enough there are plenty of other treatment options that can be combined with it to improve things a lot. It's always important to know that so that you know that you don't have to just put up with things, you can and should keep telling your rheumy how you really are. There is never only one option!

I am just wondering about one thing. You mention Chronic Fatigue, as in CFS? CFS is normally a diagnosis of exclusion and does not co-exist with lupus. Fatigue is one of the most overwhelming and debilitating problems attached to lupus. It is quite normal to feel that fatigue if you ahve lupus. Hopefully it will greatly improve with plaquenil (and/or other meds if needed).

Also, just for info, the term "mild" lupus is used simply to differentiate between lupus with no serious organ involvment, as opposed to very severe lupus. It's a docs term but in no way means that you feel it is mild, nor that you suffer less, nor that the doc thinks you do (unless he's an idiot :lol.

hugs to you
:hug:
Katharine

 

[sam101360]

Hi:

first off let em welcome you to the site! You have found the place, everyone here is in somewhat of the same boat as you in one way or another!

It sounds like you have a rough run of it for a while, however, now that you have a Dr who recognizes what's going on, I think you may find that things can improve from here.

Plaquenil is a first medication for most of us, it can help relieve many of the issues with pain in joints and muslces.

Plaquenil can take some time to kick in, so do not be discouraged if you do not feel better immediately. Give it time and you should start to see some changes.

Throughout this journey, keep a journal, so you can tell your Dr what is going on, that will help him treat the different impacts of the autoimmune disease.

As an aside...Mild Lupus is used, not to demote the pain and sufferering you go through, it is used only to calssify your disease as non-organ involving. Though this can be a thorn for us "sufferers" it is actually menat to be reassuring, Dr's can be dolts, but what can you do about it!

As to some of the other issues you expressed in your post, I can sympathise, I was there too as a young woman (though for a different reason). It doesn't get easier, however there are rewards in every life.

Stay strong - hang in there - Stephanie

 

[lazylegs]

Hi Diane,

Welcome to the site. I hope you will find it helpful and supportive. The members are a friendly lot and understand what you are going through, so feel free to ask any questions you have. Also I hope you join us in the chat room. It is a great way to get instant feedback and get to know some of the other members.

You have definitely gone through a process to finally get a diagnosis. I am sure it is a relief to finally be getting the help you need. Initially it will be a slow process but most of our members are able to go on and live very full lives.

I hope you start to feel better soon.

Take care,
Lazylegs

 

[KarolH]

Hi Diane,

I am sorry that you have had such a hard go of things. I think you have found a great place to come to for support and a lot of good information too. I have learned more from this site then my own doctor.

You did not bore me at all with your post. It helps us know you and know what your dealing with. I just hope they can get things under control soon.

Join us in the chat room sometime. You will like it there and get instant replies too. I do hope to get to know you better and know that your not alone with the daily fatigue, pain and other nonsens that we all deal with daily.

Good luck at your next appointment.:wink2::wink2::wink2:

 

[onetay]

flamenco,
Hi and welcome to the site. I am sorry that I might not be of much help to you as I am in the United States and know very little of the UK rules or ways of treatment. I did want to welcome you and let you know that if you do need to talk just send me a message and we can set up a time to be on here and meet to chat if you would like. My name is tammy and it sounds like you really do need someone to talk with. I am so sorryt hat you are having so much trouble with this and I do hope in time that things can be gotten under control for you. I hope you feel better soon. I think the best thing is that we all can relate and know what you are feeling as we have been there or are still there too. You are never alone here!

 

[earthling]

Hi,
Im new member just joined this site. Seems extremely helpful and from reading the posts (a great number of people are suffering and in deep pain) - like myself. Will now try and condense all about my health stuff (but have lots to tell) :-

I had bad trauma (horse riding accident 21 years ago) years of tests for this and that then paid privately 5 years later diagnosed by a rheumy as having FIBROMYALGIA. Years of soreness etc etc (you all know the tale). Have lived a horrible existence with pain and stuff. Never had meds only the odd neurofen or paracetamol, had muscle creams didnt help !
Last year things changed, started burning up on face, cold hands, skin, horrendous fatigue. I kept asking and my own doctors did the usual BOG STANDARD BLOOD TESTS. (NOPE - all kept coming back OK). Kept telling them I felt shockingly ILL and something wasnt RIGHT.
Now developed pain excrutiating in right side rib cage.
Up to date had blood tests for FBC, CHOLESTEROL, DIABETES, ETC. Had chest x-ray, bladder and kidney scans. lymph check etc. They said chest x-ray fine, so is kidneys bladder not anaemic, no diabetes - I WAS UPSET COS DONT FEEL MYSELF OR WELL AT ALL.

I funnily enough have been under an ENDOCRINOLOGIST 20 odd years, have polycystic ovaries and cant have kids (sad part and really cant dwell on IT EITHER , have never dealt with childlessness and will take it to the grave with me - sorry to be dramatic) maybe someone on here can support me on issues) ? It has made me a bitter person (over that sort of stuff) and that aint like me - no way.

Now under local hospital the Rheumy requested all those tests.

He said I have FIBROMYALGIA, REYNAUDS IN HANDS, SKIN ISSUES, THE RHEUMATICS "IN THERE" and wait for it LUPUS (albeit fairly mild).
The ANA blood test - is POSITIVE. DNA - negative. Im not well up with blood works so no idea.
Ive started on PLAQUENIL TABS, ONE TWICE A DAY. go back see him on
14th May. Feel awful sore, dont sleep wake up totally paralysed in agony cant turn over. horrible dreams, he said ive chronic fatigue.
I now really seriously mithered. Not in financial position to pack in work (work fulltime always have had to even being ill). I feel cant do this 5 day stuff. 3 days be better. These benefits, no idea bout it. seems I cant get ANY BENEFITS. Work dont understand and its a NIGHTMARE. Wheres it gonna all end for me ? in a total QUANDRY bout working life. No way can pack work in either.
Sorry to bore you all, have more to tell, but atleast said alot of it now !! LOL
Any replies welcome, I would love to make new friends on here, for support etc. Means alot to me. I am always here for you all too.
Hugs Diane (Di) XX

Hi Diane, welcome! I just joined the board and the support here is wonderful, there are so many nice people. I'm sorry to hear about all the pain you're going through, physical and emotional.

I'm 38 and also don't have children; I have to admit though that I never really had a strong urge to have children. I don't want to bring kids into this world, I think it's pretty messed up and it would be hard particularly at this time with so much negative influence from the culture and with the economic crisis it would be so difficult. (I apologize if this doesn't help any and I don't mean to offend anyone who does have children; it was a personal choice on my part). I've always dreamed of contributing in other ways - whether it's volunteering, finding a cause to believe in, joining activist groups, etc.

But I am thinking if you really want to have kids, could you adopt when you're feeling better? That will give you something to work for, to improve your health.

Have you looked more into getting benefits? Can you hire a lawyer? I'm not sure how it works in the UK but it must be better than here in the U.S! When I applied for disability I wrote a letter listing all of my symptoms and all the side effects from the drugs, and got my doctors to write letters and sign mine; I also requested that the hospital print out every single medical record concerning the lupus - it was hundreds and hundreds of pages and I handed all this in. I also had several trips to the emergency room - heart attack, high fevers, blood clots. I would think being in such terrible chronic pain would help you qualify; you can write that the pain keeps you from being to get up, or contributing at work, you can't concentrate - and from the chronic fatigue it sounds like your doctor can write that you require bedrest during the day every day which would make it impossible to work. Talk to your doctors and ask them to help write a letter listing all the symptoms why you can't work. Be relentless and constantly tell them about the physical pain you're going through. And if you have to constantly go to the emergency room because of your pain then so be it - more evidence as to how much debilitating pain you're in.

I'm wondering about your diet? I haven't gone through the boards yet to read about diet and alternative therapies, but I know there are certain things that can cause or aggravate autoimmune diseases. Besides the usual suspects - refined products (white flour), caffeine, alcohol and sugar (especially soda), artificial sweeteners are absolutely toxic - this includes splenda. It's in all the gums sold here in the U.S. - you can't find any chewing gum without artificial sweeteners in it. I have to go to the health food store to get gum and mints. Also the quality of water you're drinking - tap water has many toxins, and the brita filters don't filter out everything and I've found distilled or deonized water (at whole foods or health food stores - they have a machine) to be the best (completely pure) and I get the gallon sized bottled water if I don't have access to distilled. Drink lots of water, at least 8 glasses a day, if not more. And the "nightshade vegetables" - potatoes, tomatoes, eggplant & hot peppers will make your joint pain worse. The best diet is a whole foods diet - no packaged foods or fast foods - nothing processed or artificial. Sorry to go on and on about this if you already know...I need to follow my own advice if I want to improve my own health!

I hope that you can get benefits, you deserve it - make it your number one mission to find out everything you can.

Take good care,
Cynthia

 

[keebler]

Hi Di,

Welcome to the forum. It is nice to meet you.

You certainly have gone threw a lot getting your diagnoses. For many it can take years to get a diagnoses.

I think any healthy eating habits apply to all people not just the sick. Some of those natural foods can get quite pricey. I just go to the grocery store and read the labels on the back to see how much fat, etc there is in them.

Waking up in pain is no fun. When I wake up I lay there taking inventory of what is hurting and how bad it is. Hopefully when you get on the right mix of meds things will improve for you.:hug:It is such a roller coaster ride with lupus, I know how you are feeling, we all are there or been there.
Love,
Lyn

 

[LolaLola]

Hello Di, Just wanted to welcome you here.
I hope things improve for you.
x Lola

 

[orangelily]

Hi Di and welcome to the best site on the internet. People are great here. I have been diagnosed for 3 years after years of feeling a pest at the doctors. Got a new GP who is fantastic and a great rhuemy. Good luck and never feel alone.
Orangelilyx

 

[iksyfaye]

Hello, and hope you are feeling some better. As a Newbie, this site has been very helpful to me, great people and support...
I