I think the root of the problem might lie in the endocrine system.
I have an ill daughter who has had worsening symptoms for the last 10 years, so I have been doing medical research for that long. Her biggest complaints were pains, like joints of hips, knees, lower back, neck, toes, fingers. But then pain moved into her muscles, particularly her upper legs, and even more prominently after excercise, and gets somewhat better with rest. But hse is veery tired and wiped out. It is like Chronic fatigue. Ive narrowed it down-(because she faints now) -that she has addison's disease. This is an adrenal gland issue where the gland doesn't put out enough hormones.
You might want to look up Cushings disease, Addisons disease, and hyperthyroid, hypothyroid.
The adrenal gland is a very important gland, it controls MANY, many body functions with several hormones- cortisol, aldosterone, and the sex hormones. Cortisol controls inflammation. So those who don't secrete enough cortisol will have pain and inflammation. Cortisol also signals the liver to release blood sugar- so many people with adrenal problems will face low blood sugar with not enough cortisol or high blood sugar/diabetes with too much cortisol. Cortisol controls the amount of water in the body and salt to water ratios , so if it is lacking low blood volume will show. Aldosterone is also from the gland and helps to balance sodium and potassium. Low aldosterone secretion will cause low sodium and usually higher potassium and this low sodium will cause low blood pressure. too much aldosterone will cause high sodium/low potassium and high blood pressure. Nausea can also be present due to low sodium or low potassium or low blood sugar. The kidneys are involved in the action by releasing Renin, depending on what is happening with the gland. It is a back up mechanism. so that is how kidney/bladder /IC problems can correlate with the adrenal gland issue.
Testing the adrenal gland can be done with:
*24 hour cortisol saliva testing - some labs will do this on a panel and will test cortisol, DHEA, and the sex hormones from one saliva sample. I would recommend that.
*ACTH test
*blood aldosterone levels
* and then I recommend a shilling test as well, to see if there are anemic issues due to vit b12 processing problems that are common with endocrine issues.
Also do a complete blood count. Low cortisol/aldosterone can show with high or high-normal calcium. I think in this case Magnesium would be a benefit. Vitamin D causes the gut to absorb higher levels of calcium, so I'm not sure vit D is needed for this kind of patient. Also know that Fish /cod oils have VERY high vit D content, so be careful. High blood calcium (hypercalcemia) is not good, it will dump the calcium into the soft tissues, kidney, bladder, heart, veins, etc. and calcify and harden them. I tend to find that a majority of people have vit D intakes that are too high. People who have had a thyroid removed would need vit D, but the way the public opinion has been swayed to dose out vit D to the general public and even healthy children is just wrong.
As far as the electrolytes, (sodium and potassium) a large percentage of patients with low cellular electrolytes will show fine serum levels on blood tests. Unfortunately doctors really RELY heavily on serum tests.To be quite honest serum tests really don't necessarily reflect the truth of what is happening in the body, especially if the disease is not very progressed. And adrenal disease can take 10-20 years to manefest. Most symptoms are slow in comming and adding up and so most people get vague diagnosis like Chronic fatigue, RA, Fibro, and others until the disease has progressed to a point where they end up in ER. Either that or the doctor puts them on so many other drugs for these other suspected syndromes that it masks the real problem and then creates new ones, making the diagnosis even more unlikely.
The adrenal gland feeds hormones to the thyroid gland. So alot of times the thyroid is treated because there will be thyroid symptoms. But they find that the patient doesnt get better, because the real issue was the adrenals.Unfortunately doctors will up the thyroid meds but the patient will seem to get worse. That is how you know it's adrenals. Thyroid meds push the adrenal gland to work harder, thus exhausting it even more.
Kidney disease can manefest with problems urinating, burning, frequency at night, midback pain, high blood pressure, swelling and puffy eyes, face, wrist ,stomach or ankles. when Kidneys get worse you might see darkened skin, numb/swelling in hands and feet, muscle cramps, itchy, tired, loss of concentration. To test the kidney they should do creatinine testing on the blood and calculate the GFR. (glomural filtration rate).
Iv'e had doctors tell me my daughter's condition was due to growing pains, constipation, leaky gut, and possible bad memories. They were convinced she had connective tissue disease, then RA, then Anklyosing Spondilitis, and LYME. None of these were correct, so don't trust that a diagnosis of Fibro is the cause. Seems fibro and CF are just basket syndromes they like to throw people into who have several system impairments. Many diagnosis' are simply expanations of the 'symptoms' rather than the expanation of the 'cause.'
Keep in mind HIGH potassium and LOW potassium both can cause muscle aches.
Email me if you have any questions
God bless,
Gail