[catrules]

So, I have had some really general health problems for a long time. Recently, I have attributed low grade fevers, excruciating headaches, and huge pain to my mental health problems. Part of that is facilitated by health care providers who see your diagnosis and automatically think that it is all in your head. Especially, when the symptoms are unattributable to a "real" health problem.

Today, my pdoc suggested that I talk to my PCP about the possibility of fibromyalgia or lupus. My newest symptom is this weird swelling on the right but not left side of my body. Checked for clots and so forth, with no anomalies noted. Um, I do not want to have a chronic disease on top of everything else that is going on in my life. Not that I really have control over it, but still don't want it.

Told my husband tonight that I feel like Job from the bible. Everything has been thrown at me in the past 12 months, and it is getting super old. So frustrating, and this is the one time when I don't want to say I told you so. I am really hoping that this is all in my head.

Guess I am looking for anyone who has either disease, who would like to share their experiences with me. It is stressing me. And no bloodwork for three more weeks.

[skyliner]

I've been dx'ed with fibro a long time ago. I always searched for the 'underlying' problem as 'fibromyalgia' by itself did not make sense to my mind.
I searched long and hard and it seems that often fibromyalgia has its roots in adrenal fatige and/or hypothyroidism.
However, most docs/endos are satisfied by merely testing TSH. What you really need to test is FREE t3 and free t4 and TSH. It's also advisable to test vitamin d levels, and b12 and a full iron panel including ferritin (this one is a tad controversial).

It is NOT all in your head. If indeed adrenal/thyroid issues exist and they are addressed, you will see a world of a difference in your mental health functioning.

I am currently addressing both adrenal and thyroid issues and boy what a difference when the endocrine system is working as intended. I have setbacks while tweaking doses and I appear as a mental health case those days.... On days when I get enough adrenal support and thyroid support I am quite a pleasant person to be around.

Please don't let anyone tell you it's all in your head. For the head is connected to the body and they work in tandem. If something is off with the body, the head feels its pain.

BTW, I've been dx'd with lupus as well and most of it cleared up with proper diet and supplements and I guess the adrenal/thyroid support.

Bear in mind that chronic unrelenting stress plays a number on our entire endocrine system and on the HPA-axis. Google will have more info on that.

[Rhapsody]

I have RA, Bursitis and Fibro.... and I have been tested for suspected Lupus.

[lizardlady]

Originally Posted by catrules

So, I have had some really general health problems for a long time. Recently, I have attributed low grade fevers, excruciating headaches, and huge pain to my mental health problems. Part of that is facilitated by health care providers who see your diagnosis and automatically think that it is all in your head. Especially, when the symptoms are unattributable to a "real" health problem.

Today, my pdoc suggested that I talk to my PCP about the possibility of fibromyalgia or lupus. My newest symptom is this weird swelling on the right but not left side of my body. Checked for clots and so forth, with no anomalies noted. Um, I do not want to have a chronic disease on top of everything else that is going on in my life. Not that I really have control over it, but still don't want it.

Told my husband tonight that I feel like Job from the bible. Everything has been thrown at me in the past 12 months, and it is getting super old. So frustrating, and this is the one time when I don't want to say I told you so. I am really hoping that this is all in my head.

Guess I am looking for anyone who has either disease, who would like to share their experiences with me. It is stressing me. And no bloodwork for three more weeks.

I have fibro. Never heard of swelling on one side of the body caused by fibro. Doesn't mean it can't cause. I just never heard of it. Given all the symptoms you mentioned a trip to your PCP sounds like a good idea.

[Beholden]

With fibro, the body doesn't actually have swelling, only feels that way. That is the bugger with getting the proper dx, there aren't tests to prove it as far as I know. Only tests to rule stuff out.

I'm not a doctor, nor do I have fibro, but worked with a doctor as a massage therapist. I worked on a lot of patients with fibro and was not able to actually 'feel' swelling or other "physical findings". One of the things this doc would have her fibro patients take is Malic acid...it is found in apples. I'm not 'recommending you take it at all, but it was one of the nutrients those patients were lacking.

If it is lupus, the blood test will help establish that. It is a long wait when you are anxious about it, and in pain too.

Subclinical hypothyroid levels can cause issues too. Good that you have things going in the right direction.....keep us posted and hope some others can answer you post as well.

[salukigirl]

Sounds like Lupus to me. My mom has it along with RA. I started to get a tingling sensation on one side of my body and was checked because my mom has it and it turned out to be a neck injury from whiplash but that was bc I started getting the pain on BOTH sides. A diagnostic characteristic of Lupus is pain only on one side of the body. It is a immuno disorder meaning that your body attacks its own tissues - this is why its commonly associated with RA bc they have the same mechanism. This attack of your tissues is most likely what it causing the swelling.

My mom is almost 60 and was diagnosed almost 30 years ago and just takes a pill everyday. She said she used to have to take a lot more meds but technology has gotten so much better that the prognosis is quite better now than 30 yrs ago. The main problems she has are from RA and the actual disfiguration to her fingers and joints from it. But the Lupus doesn't really cause her many problems anymore. Hope I could help!

[Rhapsody]

Originally Posted by Beholden

If it is lupus, the blood test will help establish that.

Just remember that 3% of patients with Lupus can have a Negative result.

[catrules]

Thanks everyone.

Been struggling lately with anxiety about upcoming blood tests. I do have hypothyroidism due to necessity to remove thyroid when dx with grave's disease

I am just sick of feeling sick, tired and in pain. Sometimes hard to figure out if I feel poorly because of depression, or depressed because of sucky health. Imagine there is a crossover there somewhere.

I know that lupus treatment has come a long way, but I also have two friends with it, and have suffered many complications including death for one friend. Scares me a bit. But trying not to get the cart before the horse. Going in for the testing is going to be really hard. I hope that I can make myself do it.

[salukigirl]

I think that is a downward spiral. You feel depressed from being sick and then being depressed makes you even more sick and it just continues....

I'm not sure how to break the cycle but maybe your doc can help you out with that part. Remember, a positive attitude can go a long way. I used to fake a smile until the point when I honestly just felt happy. And simple things like correcting your posture, taking the time to look nice or wearing a smile no matter how you feel can honestly change how you feel on the inside. Take some time out of the day to focus on you! It can do wonders.

[Rhapsody]

Originally Posted by catrules

I know that lupus treatment has come a long way, but I also have two friends with it, and have suffered many complications including death for one friend. Scares me a bit.

While I understand the concern as I too have many different medical issues including a heart problem that could take my life at any given moment - I have also learned to accept every day I am given as a gift and I strive to do my best to take my gift of life and do my best with it on a day to day basis, with out FEAR. - as no one really knows when they are to expire, return to their place of being.

[Beholden]

Originally Posted by Rhapsody

While I understand the concern as I too have many different medical issues including a heart problem that could take my life at any given moment - I have also learned to accept every day I am given as a gift and I strive to do my best to take my gift of life and do my best with it on a day to day basis, with out FEAR. - as no one really knows when they are to expire, return to their place of being.

So true, thanks for reminding me that our life is a gift.