View Full Version : New and frightened

08-06-2009, 02:50 AM
Hi everyone, im a 36yr old mum to 4.

I am currently waiting on my diagnosis if any, i was diagnosed with Hughes syndrome 7yrs ago after i had suffered 6 miscarriages. After quite a few years of constant visits to my gp she finally referred me to a rheumy. I cant tell you the relief i feel that i now have a doc that is prepared to listen to me and not brush me off telling me my symptons are stress related blah blah blah, i am really at my wits end now, i cant cope feeling like this anymore, i am so sore i can barely get out of bed in the mornings not to mention how tired i am constantly, my hair is falling out quite badly, constant throbbing head, skin rashes, i could go on and on, this is putting a massive stress on my marriage as dh doesnt understand why i struggle with the children so much, simple house hold chores are a real struggle.

This rheumy went through all my symptons and also looked at recent blood work my own gp did, he said he thought i might have lupus, so he took another bunch of bloods which i am currently waiting for another appointment to get the results, i have to say im terrified, but at the same time in a strange way im hoping he does come to the conclusion that it is lupus that is making me feel this way, at least then there would a reason as to why i feel the way i do, for the time being he has put me Arcoxia, i have been on that for a couple of weeks now and i really dont think its making any difference to the headaches, he said this medication would help them a bit.

So until i see him again im going mad with frustration, the waiting is driving me insane, i just want this pain to go away and to feel young and energetic again, im feeling so sorry for myself right now its pathetic.

I have been reading this forum for a while now and id like to thank everyone for all the information you have shared, its so helpful to know im not the only one going through this.

08-06-2009, 05:37 AM
hi ulstergirl,

welcome to our family....i am glad you have been reading the different posts here, and i hope you have found some helpful information.

This phase of "finding a diagnosis" is so frightening and frustrating. You are right, whereas i hated the reality of having lupus, there was a sense of relief once i was diagnosed....because there was finally a reason for me feeling so bad.

i am so glad you found a rheumatologist, sounds like a dr. that you like, and this is so very important.

you might want to call the drs. office, explain to the nurse/receptionist how badly you are feeling, and that it is interfering with caring for your family, and maybe the dr. can get you in sooner to go over your labs. the sooner you start the meds, the sooner you will feel better.

in the meantime, be sure to protect yourself from the sun, take a rest break each day, and pace yourself....you might need to cut back on your daily tasks.

Stay with us, we will try to help you find some relief.

08-13-2009, 10:35 PM
Your fear and frustration are completely understandable. It is a double edged sword waiting for a diagnosis. On the one hand, we don't want to have a chronic illness. But, on the other hand, we want to know that there is a name for what has plagued us and we are not going insane.

I agree with Mountaindreamer. Perhaps you can call your doctor's office in order to get seen earlier. Or, at the very least, start medication for your symptoms so that you can begin to feel better until a definite diagnosis is made. Make sure that you keep a journal of your symptoms...when they are aggravated and when they seem to subside. Always take your journal to your rheumy appointments and insist that they go over the journal with you.

In the meantime, we are here to try to help you as much as we can and to give you as much information as we can. We, especially, want you to know that you are not alone!!

Peace and Blessings

Angel Oliver
08-14-2009, 04:48 AM
Oh im sorry you are going through this,but ''we hear you''. I hope you call you doc again and try and see him earlier and get the help you need like MDreamer n Saysusie just said. You just hang in there and know we care.Let us know how you get on.

love Amanda.xxxx

08-21-2009, 08:44 AM
Hi Ulstergirl,
I can emphasize.. I have three young ones: they are 8, 6 and 6 months. It is definitely a challenge to get things done. I feel like it's a good day if dinner gets made and a couple of typical household chores get done. I remember days when I could get tons of things done in one day! Forget that, I remember when i could get tons of stuff done in a couple of hours! Oh, to have energy and endurance again. I think that I miss that the most. More than being pain free. (although they all go together, don't they?)
My hair has been falling out too. Ugh. I feel like a golden retriever I used to have: need to vacuum all the time, but this time it's my hair! :shocked:
What I have found that has helped me the most in adjusting to that narrow energy window: learning to say no, letting go of the guilt in not meeting my own standards, learning to accept help from others, delegating to my children more (they are great at emptying the dishwasher, taking the trash out, folding clothes, my 8 yr old even puts clothes in the dryer for me...) My pages long to do list has been limited to about 5 things a day now.
Don't forget to do things just for you. This has been the key for me. I love to garden, and being in the sun is awful for me, so I take the time in the evening to walk through and do a little... keeps me sane!
Praying for you!

08-21-2009, 12:33 PM
hi deb....what great advice you just gave to ulstergirl. you are so right about reducing your "to do list". I used to multitask all day long....now, my kids laugh and say "oh yeah you single task now." (my kids are grown so they get great pleasure at laughing at me whenever possible).

i like your reference to the "narrow energy window"...this really describes what we face each day.

and yes, leaving room for one thing for yourself each day is so important....

again, i am so glad you joined....you will be a valuable member.

08-26-2009, 09:41 PM
I am new to this site, but Lupus is an "old friend" of mine. I am 18 and have never had enough energy. I was diagnosed with Drug Induced Lupus (DIL) when I was 3 years old. I got it through the INH vaccine, (used to prevent TB), and the symptoms have continued ever since, even after I was told to discontinue the treatment.
Recently, though, I have become a bit frightened. The doctors (different than the ones from when I was a kid) tell me that Lupus is not showing up in my blood tests, but that I definitly have it. This isn't what has frightend me though. For about 14 years, the pain was only in my right arm. I found that wrapping it in an ace bandage helps because it reduces the movement of my arm and wrist.
However, more recenlty, The pain has spread up my arm and I have problems helping my disabled father and my tired and over-worked mom. I used to be able to carry in the water from the car, even when I was in pain, but now I can't even do that. I am constantly tired and have to nap in the afternoons.
I know that it's not healthy, but I nap when I can. I can't find a job, and I have just started college. Now, even my shoulder hurts, and my leg has started to give me problems. I can't use the gym to strenghthen my arms, and I can't run because on top of lupus, I have asthma and nearly year-round allergies. I have a blood test coming up next month, but I don't know how to relieve the pain. I can only take Advil for the pain, and that only lasts about 3 hours max.:wacko:

08-27-2009, 06:28 PM
hi wolfwhisper (i love the name)

welcome to our family...i can already tell that you are going to be a valuable member....i am amazed at your story, what an incredible young woman you must be.

08-27-2009, 06:55 PM
Hi Mountaindreamer. The name is because the wolf is my favorite animal, and I want to become a zoologist to protect them:27:

I don't think I'm the least bit incredable. If I am, it's only because I have something that I want to live for. This time last year, last month even, I never though of myself as suffering from it. Now I feel the pain though. Even typing has begun to hurt my wrist. I am proud of all of you guys. Helping everyone else out. I try my best to cheer people up, because it's hard to cheer myself up and it makes me happy to help others. I don't know why, but ice doesn't work. Thanks for welcoming me into your guys' family. I have felt so alone, and now my best friend who knows about my "problem" tells me that she thinks it's psychological. It hurts because she used to believe that it was physical, and now she tells me it's mental.:wall: I don't believe it, of course. There is one thing that I'm happy about, even though my arm hurts and I can't enjoy playing sports. It's that having lupus, or "the wolf", makes me feel closer to real wolves. :laugh:

I enjoy this blog site. Everyone understands each other and helps each other out. Thank you all very much!:veryhappy:

08-27-2009, 11:31 PM
Hi wolfwhisper. Welcome!
I'm sorry to hear about your friend. Any idea what prompted her change in views?

08-28-2009, 07:55 AM
Hi Wolfwhisper,
I know how you feel when people think your pain is "psychological" or "mental" or "all in your mind" or whatever else they can come up with. Some people I know thought it was "psychosomatic", that I wanted to be sick. I know. I wasn't diagnosed until I was 38 years old, but when I look back, I should have been diagnosed when I was a child. I hope your arm and shoulder gets better. It's no fun being in pain. This site has been helpful to me when I am having a particularly bad day. Most of the time I go to the arcade and play Majongg. It releives a lot of stress and takes my mind off of the pain. Feel better and welcome to the sight.


08-28-2009, 09:07 AM
Hi Wolfwhisper;
I am so happy that you found us and that you feel welcome here. This is a place where everyone understands and everyone believes you. We know, for a fact, that your pain is not in your head.
There are so many reasons that may cause your muscle weakness. There are other auto-immune disorders that can cause muscle weakness in a person. Just because you tested negative for Lupus does not mean that your doctors should stop looking for the root cause of your problems. Since the pain is continuous and seems to be escalating, it might be a good idea for you to insist that they consider other issues that might be causing this. For example, here is a list of conditions that could cause muscle weakness and pain. Do not assume that you have any of these, I just want you to be aware so that you can insist that your doctors take you seriously:

Fibromyalgia -Lupus - Addison's Disease - Amyotrophic Lateral Sclerosis (ALS) - Botulism - Cerebral Palsy - Charcot-Marie-Tooth-Disease - Diabetic Neuropathy -Facial Nerve Problems and Bell's Palsy - Guillain-Barre Syndrome - Multiple Sclerosis - Myasthenia Gravis - Polymyositis - Sprains and Strains - Stroke - Congenital myopathies - Dermatomyositis - Electrolyte imbalances - Malignant tumors - Malnutrition - Medications - Muscular dystrophy - Nerve impingement - Poisoning (organophosphates) - Poliomyelitis - Thyrotoxicosis - Trauma!

In short, your pain an weakness are very real and are not in your head. If your tests continue to be negative for Lupus, then insist that your doctors run tests to determine exactly what is causing your symptoms.

I wish you the very best and remember, we are here to help you as much as we can. You are not alone!

Peace and Blessings

08-28-2009, 10:42 AM
Thanks everyone. She told me that her friends' brother has it and he runs track. Apparently he told her that if he thinks about his love for running and runs enough, the pain subsides a bit. She said she thinks that he also has a prosthetic leg. I have known her for 8 years now, and she knows that I love soccer. She doesn't see me running up and down the soccer field or stopping the ball from going into the goal, does she? But when I run, my legs and feet swell visibly, and she's seen it. I can't play goaly anymore because of my arm. When it comes to lupus, it seems like there's a wall between us.:wall: Me and everyone, actually. Well, not here of course, but the general public. At least my parents understand though, and I suppose that that's the only thing that really matters.:happysad:
Thanks for listening to me ramble.:240:

P.S. It's not from medication. I only started OCD meds about 10 years ago and started on Lexapro last week. I've already been tested for Fibromyalga, Multiple Sclerosis, was checked for tumors and malnutrition (sometimes .1 point low in iron). "healthy as a horse" is what my last doctor said. I was checked for a lot of things when I was a kid. My problems have only become more active and stronger. I'll still check everything out. As soon as I get medicaid, I'm doing the whole shizam. No rock unturned. Thanks for the list, and I'm very happy that you guys are taking care of me. Let me know if there's anything I can do to help you guys too!