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Discussion Starter · #1 ·
Hi everyone,
It's been four weeks now that I found out I have lupus and RA. I also have many spinal issues due to car accidents. My liver and kidney levels are high, and I am retaning water on my legs and feet. My b-6,b-12 & folic acid was so low I started taking vitamins. My b-12 has been low for years. I am dealing with constant exhaustion where just the smallest tasks feel so hard to get done without taking many breaks. I also am having pains in my shoulders and hips. My hands are red and swollen most the time with tightness.this has been going on for the past five years. I have lost 34 lbs in the past 6 months and noticed I have buldging veins popping out on my legs new ones almost weekly. I also have constant headaches (some are tension which are from the bludging discs in my neck) the other headaches are mid front. A lot of these symptoms I have been dealing with long before finding out about the lupus. Now knowing what I'm up against I understand why I have been feeling this way.

I have cut gluten from my diet and have had maybe a nibble on my daughters toast here and there but have really been making a point to be very mindful about what I am putting in my body and the effects that I have after eating. Regardless of what I eat I get very tired 20 min after and then get energy again a hour later. (Sometimes) I'm a vegetarian so my diet consists of fruit,veggys and beans. I noticed tomatoes and potatoes make me more tired. I am a full time 100% mom/dad trying to get this under control while being able to take care of my daughter and live. I feel at times people think I am not being honest when I say I don't feel well and the hardest person I trying to explain all of this to is not only myself but my daughter who is 7 years old.

I live in a very small town where doctors are slim pickings and not very quick with up to date anything. I am still waiting for the office to send in the refferels to the rumitoligist and cardiologist. It's been a month and they still have "not got around to it" I am not taking any medication as of yet.

Any advice is appreciated. Thanks everyone!
 

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Hi Rosemary and welcome to the lupus site.

I take it your GP didn't put you on any meds? If he did it can take awhile for the meds to kick in fully.

Could you call the doctor's office and remind them you are waiting for that referral?
Let them know how you are struggling. Giving examples is the easiest way to get across how you are feeling.

Take care,
Lyn
 

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Dear Rosemary:

I just want to say that you are not alone, and that we all went through your same fears and complains. But the first step is get a diagnosis, which you already have. Now you have to press your GP to get treatment in order to control your symptoms and the disease. Then things are going to improve for you and your daughter.

Hugs

Susana

Enviado desde mi Lenovo B8080-F mediante Tapatalk
 

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Hi Rosemary,

You really need to be pro active in getting the care you need. You must pester that doctor for your referral because you need to be seen right away.

Once you get on the right meds including proper doses for your deficiencies you will start to feel a whole lot better.

Good luck and keep us updated on your progress.

dmarie
 

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Discussion Starter · #5 ·
Thank you to all who responded. I apologize for it taking so long to respond myself. I'm still waiting to see the rumitoligist. They fin lay out the refferel in. Is there any tests I can get done while waiting to see him? Then I at least can have more to give the doctor a better idea of what's going on. I have been feeling sooo much better the past week it's amazing. I think what I was going thru was a flare up. Still learning so much. I can get thru the day without breaks every other hour and have had good energy for the most part. Being greatful for the little things is so important. My daughter is very helpful. I talked with her and explained what I could in a way raft wasn't to much for her. I cut myself off gluten and my hands look amazing as well as my joints feel not so pain full. I did have some bread at my sisters with olive oil Andy daughter got upset tellingly that is a thing I should stay away from (smart cookie) within a hour I was so tired I fell asleep in my sisters bed for two hours. Is this something anyone else experiences? Also I was wondering anything else I should stay clear of? I try not to eat potatoes or any of the night shade veggys. They make me tired. I am just worried that I will start to feel again what I felt just a month ago. When it started it lasted three months till I was at least 75% and I was so scared he was debating on a daily basis going to the WR. I am not trying to sound dramatic at all I'm just putting what I felt/feel out in the world. I realized this is something I can not do alone and that is a big reason I joined. I am so glad to talk to others who can understand, relate, and, share there own experiences.
I hope all is doing well. Thank you again for taking the time for responding.
 

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Discussion Starter · #6 ·
Oh one question should I worrie about my teeth. I had a exam a yr ago and everything was fine. I've had many teeth issues and am feeling like there more sensitive lately. Also my tongue sometimes gets swollen and hurts with eating oranges, pinapple any citrus. Just wondering if this is related. Sorry if it sounds silly..
 

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It is great to hear things have improved. A few others on the site have found a gluten free diet helpful also. Then again others didn't see any difference at all. Our bodies are all different so we each have to do what is best for ourselves.

The main worry with your teeth would be dry mouth. Dry mouth can lead to tooth decay. Increasing your liquid intake or sucking on a sugar free candy may be enough. There are also toothpastes and mouthwashes specifically for the problem.

I am wondering if you have some small sores on your tongue. Eating citrus would definitely cause the reaction you mentioned if you do. You may find using a salt water rinse a few times a day will help.

Take care,
Lazylegs
 
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