Please help

So I am 35 and a mom of a 7 yr old and 5 yr old…I have been in pain since 2001, and when I was getting ready to separate from the military in 2007 and they told me congrats your are gonna have your second baby but you have lupus so u may not carry to full term…well six weeks after I had my baby I went to an RA dr…and he was so clueless…he treated me with everything for almost a yr, then told me he had done all he would to find someone else to help me. :frowning:
Then I found a great dr and she was on a roll then decided to go to Hawaii to work…then everyone at her office didn’t help and I was pasted around then the last dr I saw told me I don’t have an autoimmune diease. But I do have fibromyalgia. :(. It got to the point I was slowly getting worse…pain was so bad I was having trouble getting simple task such as dishes, laundry and other household chores done. :frowning: I saw a dr and she told me what I thought …lupus, fibromyalgia, inflammatory arthritis. :frowning: the meds have me so dizzy getting up and turning around I struggle going up the stairs to bed…I refuse to go up and down each floor if I don’t have to. I don’t have any energy and when I do it is only for ten minutes…any suggestions?

I don't have suggestions but I know how it feels

Get a good and/or recommended rhuematologist. Your level of pain needs to drive you to a doc who you're can work with.

Thank you! I think I have found a great dr! I don’t have as much pain as I had in October but I feel sluggish and my heart races with just the smallest movement! :frowning: what makes it worse my family depends on me to keep up with the house and make the meals…my hubby is tired of eating the same meals over and over cuz they are easy for me to make. I can’t keep my mind on track. I don’t feel like I am in the fog as before I just can’t concentrate on anything and when that happens my heart races then I can’t catch my breath…

Hi Jen

I'm not sure what meds you're taking, but my doc told me that once my inflammation was lessened, my energy would increase. Concentrate on getting some rest, how are you sleeping at night?

Trisha

I am taking plaqunel, methotrexate folic acid prednisone and something to help me sleep…my swelling is not going down but I have also gained the 20 pounds I lost this past summer in one month. I am sleeping good enough that I don’t wake up feeling like a Mac truck ran me over a couple times. I am trying to rest but my young family depends on me too much. I am working on it though. Thanks Trisha.

jenc443,
I am glad you are beginning to feel better. Does your Dr. know about your swelling? If not he/she should be kept up to date.
After 15 years I had sudden swelling in my lower legs and ankles. I went to my PCP who referred me to a cardiologist. After testing was finished I was told I have a heart murmur and left sided hytrophy. So I take one more med and I have water pills and potassium to take when I get the swelling, which is rare. Congratulations on finding a great Dr.!!

Adjusting to the changes in your body is one of the hardest things to tackle. Even harder when people depend on you. As hard as it is you do need to make some changes which as a fellow mom I know feels impossible and like you are letting your family down. When the kids are at school instead of running around trying to get as much done as possible you may need to force yourself to rest. Remember if you don’t have the energy the dust that is there today will still be there tomorrow. Try to pre plan. If I know I have a school function like chaperoning a field trip I do nothing the day before. I also agree with the other members you absolutely need a good rheumy!! You are going to have to be really strong and fight and advocate for yourself. Approach it like you would if it was happening to one of your children because it is not only for you but for them too. If you are somewhat absent for a while its ok!! Remember the sooner you feel better the more you can be there for your family. It is a long frustrating process!!! It takes months to get a rheumy appt and then sometimes you have to find a new one. I made appointments with a few and then cancelled when I found one I liked. We all feel your pain,anger,sadness,and frustration. Stay strong and keep fighting!!!

Hello Jenc,

Your have quite a combination going on of A1 Diseases like myself and when symptoms kick in you do know about it, especially with lupus and fibro being identical in symptoms.

You need to take your life slowly because of how you are sffering and what ever you do daily as to be paced besides resting in between.

I was looking at your meds just and for you to be taking folic acid on it's own is'nt right...i'd get that checked out as it's usually anaemia and you also need B12 jabs to go with the folic acid like myself...if the specialist says you have'nt got it then ask why your taking it.

Love Terri xxx

jenc443 said:

I am taking plaqunel, methotrexate folic acid prednisone and something to help me sleep......my swelling is not going down but I have also gained the 20 pounds I lost this past summer in one month. I am sleeping good enough that I don't wake up feeling like a Mac truck ran me over a couple times. I am trying to rest but my young family depends on me too much. I am working on it though. Thanks Trisha.

Thank you for all of your comments! I appreciate them! I am very disappointed cuz this year was the first year I could help out at my girls school but I don’t have the energy to do anything by the time I get there.
When everything started with pain in my lower back and numbness in my legs then got worse.

Hi Jen!

I'm so glad to hear that you are feeling better, but please don't try and do too much. Your body is only able to do so much right now and it will take time for you to adjust to your energy levels. I hope your husband will be able to help out, too, since you will need assistance around the house. My husband had to learn to take care of things, too.

You are taking a lot of strong medicines all at one time. I, too, went through those same meds and had to deal with the weight gain and other side effects.

Thank you for your service to our Country! I pray that each day is peaceful for you!

Love and hugs,

Lori

Jenc,

Don't be so hard on yourself. This is an insidious disease(s)...I don't think anyone has just SLE. However, it's important for your health and state of mind NOT to stress yourself out over things for which you have no control. I believe most of us had active, full and eventful lives prior to our diagnosis. That said it is the ones that do what they are capable of that seem to be able to handle things better. Take your husband with you to your next doctor appointment so he understands what you are capable of physically doing. I for one had negative blood indicators, but lupus was confirmed via a kidney biopsy. This goes to saying that you don't have lupus anymore. It doesn't go away, although I understand people can go into remission for years at a time.

What it boils down to is that you must take care of yourself before you can take care of anyone else.

Best of Luck,

DeAnne

Excellent advice DeAnne!!!!

Love and hugs,

Lori

whathappensinvegas said:

Jenc,

Don't be so hard on yourself. This is an insidious disease(s)...I don't think anyone has just SLE. However, it's important for your health and state of mind NOT to stress yourself out over things for which you have no control. I believe most of us had active, full and eventful lives prior to our diagnosis. That said it is the ones that do what they are capable of that seem to be able to handle things better. Take your husband with you to your next doctor appointment so he understands what you are capable of physically doing. I for one had negative blood indicators, but lupus was confirmed via a kidney biopsy. This goes to saying that you don't have lupus anymore. It doesn't go away, although I understand people can go into remission for years at a time.

What it boils down to is that you must take care of yourself before you can take care of anyone else.

Best of Luck,

DeAnne

Try mucinex for the pain. Read up on it and fibromyalgia. It was the only thing that helped with my pain. I don't know why it works, but it does. sometimes, at certain drug stores/dollar stores, you can find the generic for super cheap. You have to be careful not to use anything with salicates (not sure about spelling) type products with it because it diminishes the effects. That means check toothpastes, gum, lotions and hair care products. It worked for my friend as well.

DeAnne,

Well said mate and sound advice about Lupus :) xxx

whathappensinvegas said:

Jenc,

Don't be so hard on yourself. This is an insidious disease(s)...I don't think anyone has just SLE. However, it's important for your health and state of mind NOT to stress yourself out over things for which you have no control. I believe most of us had active, full and eventful lives prior to our diagnosis. That said it is the ones that do what they are capable of that seem to be able to handle things better. Take your husband with you to your next doctor appointment so he understands what you are capable of physically doing. I for one had negative blood indicators, but lupus was confirmed via a kidney biopsy. This goes to saying that you don't have lupus anymore. It doesn't go away, although I understand people can go into remission for years at a time.

What it boils down to is that you must take care of yourself before you can take care of anyone else.

Best of Luck,

DeAnne

I Had the exact same symptoms as you. Just walking from one room to the next took all of my energy. Heart pounding on my chest short of breath etc. Turns out I had dangerously low potassium and vitamin D! Doc wanted to admit me but, I begged her not to and I took pills and it did help! You need to get some blood work done… Best of luck to you sweetie!

Thank u lee carter! I just had a lot of blood work done…I did talk to my dr and she wants me to get an EKG to make sure my heart is ok…my mom was told she has pulmonary hypertension two years ago! If it is not that then i need to check my meds. :(. Thank you!

Please make sure to take a multivitamin every day. I've been taking a Centrum for women for years and I know it helps me get the nutrition that I desperately need since I don't eat enough. The blood work will tell you a lot about what is going on. I also take extra calcium with vitamin D cause I have osteoporosis due to the steroids I'm on.

Lots of love and hugs,

Lori

Hello Lori,

To say your health covers alot of issues NO ONE can ever say your not covering yourself otherwise for what your body needs, although you don't eat much.

Stay strong my friend & all my love Terri xxx

Just received my latest blood test results and my kidneys and liver are elevated. My SED rate is the lowest it has been in years....what a shock! Anyway, I have to wait a month until my next doctor visit and we will test my blood again. In the meantime, I'm taking each day as it comes as I'm SO tired.

2013 is going to be a good year for all of us....I'm praying for it! Love you all! Lori