View Full Version : Hello everyone i am new to your site :) xx
12-13-2008, 07:58 AM
Hi i am Angel and live in the UK. This is my story.
I was healthy, travelled the world on my own, went out dancing and socialising and had many friends. In 2004 i made 3 trips to Tunisia which was fab, but each time i was so sick, with i think food poisoning. The last trip i got Flu. I then got gum infections which were so painful and i felt so low and cried all the time. I carried on as normal, even though i felt so depressed and anxious, yet never really recovering from my ailments. Then in the summer of 2004 i was so exhausted i couldnt get out of bed and believed the world was coming to an end and for a few days couldnt walk or talk, just cry. I saw a UFO and my dog dissapeared right in front of my eyes. It sounds funny i know, but at the time i thought i was going mad. The Doctors first told me i had a nervous breakdown. I was off work a few weeks, but went back part time, knwing i felt so terribly ill and knowing i was losing my mind. In 2005 i was diagnosed with M.E.
Last summer my asthma flared up to the point i was having up to 5 asthma attacks a day. I was and still am totally exhausted and so very depressed and anxious and have severe insomnia, but i have an nebuliser now which saves me so many times.
Last month i asked my Doctor to help me as i felt i was just existing and not living anymore. People i worked with and friends have all gone now and i am totally alone. He sent me to see a top M.E consultant who took blood tests.I have not yet had the results, but he said i have got LUPUS. I asked how could he be sure when i have not had the blood results back, but he said i have, he knows by my medical history and he is an expert. He has given me a drug called Pregabalin to help with my headaches and joint pains and muscle pains. I will start it in January, as i am afraid cause it has some weird side effects e'g suicidal thoughts and stuff. My nurse will monitor my moods when i begin it. I have rashes, slightly on my face sometimes, but mega rashes on the tops of my arms, but they come and go. I just hope this new drug will make me sleep. I can go days without sleep, yet when i do sleep i have major nightmares. I had to stop going to work last December as i felt so ill. Unfortunately, my work collegues do not understand this illness, so have kept away from me.I did hear they had the works christmas do last week and they never invited me.I cried.
I didnt ask for this illness and before i was so active and lived life to the full. Now aged 39 i am housebound with severe aches and pains, insomnia and panic attacks. Fingers crossed these new pills will help me!!
Sorry ive gone on a bit lol.
12-13-2008, 09:09 AM
Welcome to the site. I am also new to ther site, but I am sure that you will soon hear from some very knowledgeable people that will be able to offer you a lot of information. When searching for specific answers, I scroll down the various topics, find my topic, and read old postings. This has really helped me.
Share a smile today,
12-13-2008, 09:38 AM
Welcome to the site. My name is Kathy. I have SLE Lupus and have had it most of my life. I will be 50 on the 17th of this month. I am wondering why your doctor has not put you on Plaquenil or any NSAIDs for the inflammation that comes with Lupus? This is a hard disease to deal with, but once they get the medicine that will work for you you should be able to manage pretty well. I hope that you keep posting.
12-13-2008, 10:17 AM
Ah thank you for your replies. I will look at all the info. I think it maybe because i have been on Prednisolone on n off for a year for my asthma. Should i ask him that question? The Consultant said the new meds Pregabalin will help with the pain, aches and the insomnia. My joints do not swell though, so im not really sure why not.
12-14-2008, 02:27 AM
Hi and welcome! I am also new and everyone has been an angel on here! You will always feel welcomed and everyone will do everything to help you and comfort you! Pick your head up, you are not alone and we will all be here for you through this difficult time! :angel:
12-15-2008, 04:16 PM
Hello and Welcome :lol:
I have to ditto Kathy's question about Prednisone. If your doctor is truly a Lupus expert, then why did he not prescribe the cornerstone treatments for Lupus? Prednisone, Plaquenil, NSAIDs.
Pregabalin is used primarily for Fibromyalgia. It may well be that you have Lupus with the overlap illness known as Fibromyalgia. Many of us (including myself) do suffer from both illnesses. The difference is that lupus is a disease and Fibromyalgia is a condition. Fibromyalgia is known for widespread pain in the muscles and tissues, migraines, sleep disorders, and other symptoms. Lupus is a disease of inflammation that can attack every single part of the body - including internal organs.
In the first defensive treatments for lupus, Prednisone works to suppress the out of whack immune system that is attacking itself - Plaquenil works to heal and stop the issue involved with the skin (rashes etc.) - NSAIDS help with pain and inflammation (each drug does more than I've stated here, but these are general symptoms that they help).
Ask your doctor (the Lupus expert) about these medications and let us know what his decisions are. Remember, you are your own best health advocate. Do not let him dismiss you and insist that he prescribe something to help relieve ALL of your symptoms.
Please know that you are not alone. All of us, here, understand what you are dealing with and we are here to help you. I am so happy that you joined us.
Peace and Blessings
12-16-2008, 01:41 PM
Hi and thank you for your reply. I dont know whether this is the same drug, but all year i have been on Prednisolone for my Asthma. I stopped it a few weeks ago as my asthma got a little better.
In 2004 i suddenly became ill and in 2005 i was diagnosed with ME. 2 weeks ago i saw the ME Consultant who says i have Lupus and did some blood tests,which i have NOT had the results back yet.I get them in January 14th. This Doctor then prescribed the Pregabalin, which i have decided not to start till January because of the weird side effects. I did call my own Doctor and asked the question, how can you know for sure i have Lupus when i have not yet had the blood tests back and why am i taking Pregabalin if you are not 100% sure. My Doctor said the Consultant will know through experience as he see's many people with Lupus and has been a consultant for many years. I am so worried, because he said i have it and i have told people now i have it.But what if he's wrong? People will think i am making it up and i told my Doctor this and he told me not to worry. How funny...how can i not worry lol.
Here are my symptoms and illness and what i told the ME Consultant :-
Migrane n headaches
Vision disturbances (just got glasses for the first time)
Sound problems (everything too loud)
Severe gum infections and tooth pain
Strange rash on tops of arms which comes n goes
Little rash on face, but only a little (cheek bones)
Severe neck and shoulder blade pain (intermitant)
joint pain and aches (intermitant)
anxiety (panic attacks)
Severe stomach/abdomen pain n swelling
Hair fell out and has started to fall out now ive decided to try n grow it.
WOW what a catch i am lol.
Believe it or not, i was very healthy before, was hardly ever ill. All this happened all at once. Yes, when i see the consultant in January when i get the results i will know 100 % what i have. He did say to me the blood tests could come back negative and still be Lupus.....who do i believe? Please let me know your thoughts. Thanks.
12-16-2008, 01:49 PM
I remembered more ailments:_
Memory problems lol :)
Numbness in arms and hands/feet/toes/fingers
Stiffness in body
Waking up after a dream (when i ever do get some sleep) i am completely numb, yet can still hear the 'man' in the dream laughing as he tries to strangle me.....yet i cant move or scream...even though i am awake
Right leg and feet go dark purple and blue.
Brain fog/confusion.....or is that cause im 39 lol :)
12-16-2008, 01:50 PM
Real scarey heart palpatations as well.
12-16-2008, 04:55 PM
I know for a fact that the dr. can help you past this. Please call and beg to see the dr. or the nurse practitioner. Mine is great, and I don't mind seeing her whenever I can't get into rheumy.
I went in while in the middle of an incredible flare, and she gave me a Medrol injection. That was two weeks ago, and I feel great. Having to make myself slow down.
When I went in, I had every symptom that you listed above. Call and beg if necessary.
It is a shame that when we feel the worst, we have to fight the hardest...but if you get a good rheumy, it really helps with the questions and fright.
You might contact your local lupus support group, and get some recommendations for a good dr. in your area.
Good luck to you,
12-17-2008, 06:06 AM
Hi and thanks for my replies andi hope you both are having a good day today. I do think of you even when i am not in here.
Thank you for your advice. When i first saw my consultant a few weeks ago, i did list all my medical ailments, which he did not read.He said he'll read it later. I did write on there about the heart thing.I mainly get a really really fast deep, deafening heartbeat at night.Or when i eventually fall asleep my heart wakes me up cause i feel i have stopped breathing then havve to take a massive breath.....which then kick starts my asthma.....oh so exciting...so many things to cope with. I was told and fobbed off by my old doctor (who im so sure he thought i was attention seeking) and he said oh its anxiety.NO WAY!!! I know when im anxious and this is NOT anxiety. This same Doctor had me on a high dose of betablocker for a year.I HAVE ASTHMA!! When i moved doctors he went mad and took me off them immediately and ive been on steriods ever since.But am off them now (fingers crossed, 5th day without an asthma attack and severe coughing...ahhhhh heaven).
So back to the point....i feel intimidated by Doctors now and am too anxious to say about all the many ailments, so i dont remind them when i see them about my heart, cause im scared they'll just say oh its anxiety.BUT after reading your messages, when i see the Consultant in January, whether my bloods come back negative i will tell him.Its every day....or sometimes the heart feels like its missing a beat, but i suppose its not.I have had an ecg and all was fine.......this illness makes you feel 'its all in the mind'' but i know my body........THIS BODY IS NOT MINE''. :)
I have a story about a paramedic, but its a bit long and will make it much clearer why im intimidated by medical people. It happened to me last November. When you are ready for this story, let me know and i'll tell you what he said to me.Was so awful, i cried.....i reported him to my GP. It will probably strike a nerve with some of you and how ignorant some medical staff treat people like us....or me any way.
Angel :) xxxxxx
12-17-2008, 06:10 AM
I have just realised i was posting to Mountain Dreamer and the other person was myself......sorry i am not mad, just tired lol :)
12-17-2008, 10:15 AM
You can post your story about the ignorant paramedic whenever you like. But, rest assured, we will all probably recognize the story and will probably have some equally horrifying experiences ourselves :lol: We've all fallen victim to ignorant medical staff and have been the brunt of their cruel and insensitive statements. I am sorry that you had to suffer from such a thing and even sorrier that it has hampered your ability to be aggressive with your doctors.
So, here is what we are going to do for you here at WHL (amongst other things that we are here to help you with). We are going to help you to become your own best health advocate. We are going to help you to overcome your intimidation of doctors by educating you about Lupus (and other auto-immune diseases, if it turns out that yours is not Lupus) so that you will be able to have informed discussions with your doctors. We are going to help you to learn how to insist that your doctors do what is right for you and that they listen to you and that they believe you. The next time that you take a list of symptoms to a doctor and he says that he will read it later, you will say "No, you are going to read it right now, right here, while we are both here. Then, you and I are going to discuss each item that I've listed here and WE are going to make a decision about what treatment will be prescribed for each item! You are my doctor and that is what you are SUPPOSED TO DO and that is what YOU ARE GOING TO DO. If you can't do that, then send me to a doctor who will!"
Do not worry about telling others that you've been diagnosed with Lupus. Even if your illness is not Lupus, it is most definitely an auto-immune disorder in the same family with Lupus. So, if you don't have Lupus, it will not mean that you don't have anything. From the symptoms that you've listed, it appears that there is some auto-immune reactions happening in your body. Regardless of which one it might be, there are treatments for all of them (many of which are the same) and treatment should be started very soon.
Prednisolone is in the same family as Prednisone. It is very important that you never abruptly stop this drug. You must taper off of these drugs or you could have some very serious medical issues due to the abrupt cessaction. The tapering must be done slowly and in increments and under a doctor's guidance.
Were you also diagnosed with chronic fatigue syndrome along with your myalgic encephalomy? It is not unusual for this diagnoses to be made prior to a patient developing symptoms of Lupus and/or other auto-immune disorders. Also, CFS and Fibromyalgia are overlap illnesses. ME/CFS is now recognized as part of a range of illnesses that have fatigue as a major symptom. ME has very similar characteristics to Lupus. Like Lupus, it is a chronic, inflammatory, primarily neurological disease that is multisystemic, affecting the central nervous system (CNS), immune system and cardiovascular system, the endocrinological system and muscoskeletal system. ME can cause a wide variety of symptoms, including changes in sensory tolerance, visual problems, exertional muscle weakness, difficulties with coordination and speech, severe fatigue, cognitive impairment, problems with balance, subnormal or poor body temperature control and pain. For almost everyone, ME will cause a degree of impaired mobility and disability. The degree of impairment and severity of symptoms depends on the degree of brain injury and organ involvement. All of these descriptions are also true of Lupus, so it is not uncommon for a patient to have both illnesses as overlap.
It will help you greatly to learn all that you can about ME, CFS, FM, and Lupus. We are here to help you do just that. In so doing, you will be much more able to make decisions about your health and your health care and you will be much more able to proactive with your doctors.
I wish you the very best, and remember, you are not alone.
Peace and Blessings
12-17-2008, 01:46 PM
WOW!!! Thank you for caring so much and for all your knowledge and advice, really really appreciated.
12-17-2008, 02:34 PM
Do not worry about what drs think. It is tough enough worrying about friends and family's understanding and acceptance. You don't need to worry about others.
In 2003, I was seeing the "best rheumatologist" at a major hospital in Atlanta. He ran test after test, and could not diagnose anything. Thinking that I must be dying if he can't find out what is wrong, I went to the Mayo clinic in Jacksonville Fl. They diagnosed Fibromyalgia. Escatic, I went back to the Dr. with a diagnosis. His response "I don't recognize Fibromyalgia." My response...."then I don't recognize you" and I walked out and began the search for a new rheumy.
I found a treasure for a new rheumy, and am grateful that the 1st dr. did not want to work with me. Hang in there....don't make their job easy....you are right and they are wrong.
P.S. So far all of my drs. are women, and I have great confidence in each, and each of them and their staff treat me with great compassion and respect. Just a note for what is working for me.
12-18-2008, 02:43 PM
Wow, well done you! How i long for the day i can say something like that lol......i chuckled when i read it.Yes you are right...be confident!!! Hopefully with the help of everyone here, one day you'll see confident, assertive words from me, but i suppose it'll take time.
Thank you for your reply.....gives me hope!!!
Hope you have had a good day today.
12-18-2008, 03:18 PM
You are most welcome, Angel Oliver. We are here to help you!
Peace and Blessings
12-21-2008, 09:18 PM
Hi Angel & welcome;
There are wonderful people here. I do not feel so alone when I read everyone's threads and responses.
I understand what you are saying about the fear of medical personnel. I am so afraid to go the the ER for fear that I will be treated like a drug addicted faker.
I was diagnosed with Lupus 5 years ago. I am being told I am in remission, but I feel worse with each day that passes. I was even told that it is my brain playing tricks on my body. I have multiple joint pain, swelling to all four extremities, chronic fatigue, numbness and tingling in all extremities, headaches, petit mal seizures and most recently, my brain can't seem to get the message to my legs to move for a few minutes. I was told that the pain may be a side effect of the swelling, but no one knows what is causing the swelling. Liver is fine, kidney is ok (Left one not functioning, but right one is good)
Hang in there and keep posting. These people are great.
12-22-2008, 12:46 PM
Oh thanks so much for your lovely welcome. Yes after a few years of people not believing it makes you feel like and think.....maybe it is all in my head.But NO.....WE ARE REALLY SICK PEOPLE. To think there are 'people' out there who think we love to be housebound and just exist and not live.....oh how wrong they are!
I am glad i have found you all....every day you make me realise.....how wrong THEY are and how real we are.
I hope you have a lovely day and a fab Christmas...even if you are resting like i will be.