ALMOST had myself convinced "It was all in my head" then... worst flare yet!
I truly have felt wonderful for the last few months. I had a narcotic drug problem from which I have been sober for 8 months through methadone treatment. I take a low stable dose everyday for pain, and drug abuse treatment. I was diagnosed about 6 months ago but had been having symptoms mildly starting about 6 years ago(the birth of my 1st son)They included sever fatigue, numbness in limbs, muscle pain & weakness, headaches, joint pain, stayoong sick , cuts not healing well, bleeding for hours even w/ pressure applied, URI, UTI, dizzy spells, balance issues. All of which I attributed to my growing party girl persona and the drugs I was on and off of. I did not see a doctor until I had gotten my life together at the age of 25 (about year ago) They then progressed to moderate & severe about 2 years ago all the previous symptoms plus hair loss, redness on nose/cheeks/chest, skin discoloration, loud constant poping of bones, strange skin sensations /burning/pain/tingling, eyesight and eye trouble floaters/sparks/double vision, chest pain, out of breathe, severe candy cravings, instant sudden severe swelling of the ankles feet, and calves ect ect.... Doc says he thinks its lupus because of my abundant cocktail of symptoms and my odd out of the blue massive pulmonary embolism (which almost killed me) when i was 22. I was devastated to hear the news, my Rheumy said he would continue to look for other answers and continue to rule out other mimic disease diagnoses, but that he was almost positive. Yet , no meds i hear everyone else is on... I'm only on ibprofen, neurontin (which i beilieve has also improved my moods as well as numbness and some pain) and the 70 mg of methadone. Anyways, DID NOT WANT TO ACCEPT THIS DIAGNOSIS BECAUSE MY COUSIN DIED AT AGE 42 OF MASSIVE KIDNEY FAILURE FROM LUPUS AND IT SCARED THE SHIT OUTTA ME. For the past few months I have felt ALMOST pain free, mentally balanced, focused and goal driven, dare i even say... HAPPY!?! So in my denial of lupus I had almost convinced myself that for the lat 6 years I had made it all up in my head, been faking it, maybe even be cured. Maybe it was just a vitamin deficeincy and the vitamins I've been taking lately cured me!?! Ha! If I only new what was to come.
About 3 days ago I said out of nowhere, "oh no, its coming.. and its gonna be bad!" Don't ask me how I knew or where that came from I just did. Also things had been happening to me for a week that I have never experienced before. Well I have but not in this way , not this severe. I was dizzy but on top of that, I was constantly bumping into doorways, falling, tripping, dropping things, my perception was WAY off and my balance? FORGET ABOUT IT! i DID THE TEST THE DOC GAVE ME A FEW MONTHS BACK, PUT MY HEAD BACK , CLOSED MY EYES AND TRIED TO LIFT ONE FOOT IN THE AIR ABOUT KNEE HIEGHT. i IMMEDIATLY STARTED VIBRATING side to side and fell over (on the bed) It was so strange. I couldn't concentrate or remember the script for the new telemarketing job I just got 2 weeks ago. I new something was off, something was coming, and that something was gonna be bad! Low and behold 3 days later I almost couldn't get out of bed. I was forced to quit my brand new job(first job in 2 years, family of 5 to support) My pain is excruciating and it feels different like I have a huge rubber band on the upper part of all my limbs cutting off the circulation. The kind of pain u feel when you leave a hair tie on your wrist too long and it starts throbbing and sending lil shocks of pain down your fingers, except all over my arms and legs. I have little bursts of blood vessels all over my ankles and feet. My hips and buttocks are worse than ever and I'm falling asleep mid sentence right now and having to refocus on what im writing and thinking about. I took 1 flexaril (muscle relaxer which i stopped taking because they made me feel more tired) its helping but i really dont want to have to continue taking them but what am i supposed to do? The methadone isn't touching the pain and I just came to the realization that if i cant remember a simple tole marketing script how am I going to start going to college next year for a BS in psychology? I have gotten my life together and made such an effort and triumphed over so many demonds and now something that is completley out of my control, out of my hands is going to take me under gain.... I dont know what to do.... anyone with advice, similar stories, or comfort would help. Thanks so much for reading my long ass post! Im trying to keep my head up... btw HERE ARE SUM PICS OF MY FAMILY... NICE TO MEET YOU!
Hi Ajnewbielupie! Wow, that's a mouthful, hehe. First off - welcome to the forum (: Lupus is a scary diagnosis, and i'm sure it must have freaked you out even more what with dealing with your cousin. The good news is, that that's a very rare case. Lupus isn't a death sentence, and as you'll see on this forum, people can live for many, many years with this disease. Also, every person is different, so try not to worry about it too much, just focus on right now.
I think we all go through a phase (relatively close to when we first start being sick or getting diagnosed), where we convince ourselves that we were just overreacting, the pain wasn't real, and we can just muscle through it if we still have it, or just go on without it, if we don't. I know I went through that phase... but, like with you, reality smacked me in the gut, and I had to come to terms with the fact that it was very, very real.
Congratulations on being narcotic free for so long (: That must be a hard journey to keep on, especially with the pain you're in, so my props to you!
That's horrible that you had to quit your job... it's such a hard time these days, to get good job and keep it, especially with people like us who are so sick.
I dont have much of a similar story to you, as i've only been sick about 8 months, so I still have much to learn.
But I know many people on this site do have a lot to tell you, and stories similar to yours, so i hope you'll stick around (:
Good luck with everything, and welcome to the forum!
OH wow, I can't reply much because I'm at work and dont have much time. but besides wanting to say welcome, Althought I don't know you but hope to know you, I want to say I'm very PROUD of you for getting your life together!
Good for you getting your life together. My son is in methadone program too for narcotic withdrawal.
Your post was a little hard to read w/ no paragraphs. Have you seen the doctor since the acute onset of these new symptoms? It's important that you do. I might have missed it while scanning through your post. Also if you are going in on a weekly or daily basis for your methadone, I would ask to speak with your counselor. You've come too far to slip back.
Welcome, and I'm sorry that you need to be here - but it's good that you found this amazing group of people. You sound pretty amazing yourself. Manderson is right, if you haven't talked to the rheumy about your neuro symptoms, you should do so ASAP! It's kind of strange that you aren't on any meds. When do you go back to see him?
First let me welcome you to WHL. Paragraphs or no paragraphs we are really glad you are here and posting! Next I want you to know that if I could reach you I would give you a massive high 5 on turning your life around. It is not easy to do. It is even harder to stay on track when you are ill. This can be a painful disease and, for those of us with dependency issues it is a fine line between getting the meds we need and getting the meds we want. Sometimes it means finding a level of pain that we can tolerate and pushing pushing through without picking up the pain pills.
Please remember that a Lupus diagnosis doesn't mean a death sentence. I know it is scary because you lost a family member but things are better now as the members with decades since their diagnoses can show.
Welcome to our WHL family! I look forward to getting to know you
Success is not final, failure is not fatal: it is the courage to continue that counts.
Hi welcome to our family. Gosh, before I was diagnosed and treated with Plaquinil, I used to get so sick, I wondered if I would die. I would stumble a lot, and sometimes not be able to get up once I fell. I think you are alert and more aware of what your body is doing now. As time goes on you get better and better at being able to sense a flair coming on. My stomach gets sour and I feel numbskulled. It will tell you when you need to slow down, sleep, etc. Gosh I hope someone gives you a diagnosis and tries something to quiet your immune response. Good luck dear.
welcome to our cyber family.
i have had my symptoms for over 30 years.
i had bad organ involvement, but have been lucky to have my medication stabalise me.
i am sorry you lost your cousin.
most people do not die nowdays.
if you are in a flare, please try to see your rhuemy again.
i also want to say well done with the narcotics.
I COMPLETELY understand what you mean when you say your perception has been off. I've been bumping into every doorway, wall, piece of furniture, and person within a one foot radius for the past week and a half. I'm really sorry that you're going through this though and I hope you get the medication/medical intervention that you need to feel better!