Seeing A Rheumotologist For Increased Muscle/body Pain - What To Ask/expect?

[iheartcats]

My muscle/body pain has really increased rather dramatically over the last couple of months. It may just be POTS as I know others have it and have discussed it on the board. (Just POTS...ha)

Since I'm having more deep aches and have had positive ANA in the past, I've been referred to a Rheumy. What should I be prepared to ask and share? It's not like POTS is typical.

Regarding the baseline pain - say you poke yourself on your arm not very hard - similar to a light massage level - this hurts. Lightly squeezing really hurts on my arms and legs, too. I barely have to press on my shoulder blade area and that hurts a lot. It seems improbable, but I am not exaggerating.

[Poohbear]

I would suggest you keep a diary of your pain levels. You can also draw the body (if you can draw....I can't) or you can google the term "pain diagram" and find one you can print; this will allow you to mark on the diagram where you experience pain.

It's hard to know what to tell you to ask because they first have to figure out if you have any condition that falls under the scope of rheumatology.

Beyond that I would inquire to make sure common vitamin deficiencies have been checked and corrected if applicable---low iron, low vitamin D and low B vitamins can all severely impact muscle issues and can cause muscle problems.

[mjan]

Have the exact thing except the ANA. Rheumies want to DX and treat with meds. All/MOST docs treat with meds..its what they know. A lot of extra pain is from toxicity..in our systems. Think of doing a safe..natural detox of liver then colon found in health food stores. Its NOT running to the bathroom but gets the pipes cleaned out = more energy and less pain. Try it.

Just know that meds in themselves makes us toxic with side effects et al. AND..we need to build UP our brains/systems with safe non toxic NUTRIENTS!!! You'd be surprised how everything works better with less toxicity in our bodies.

I know this subject well.. my husband died from medication toxicity...sad.

Good luck with all you are going through. I hope you get answers.

SORRY you are struggling so....know it well

Warmly Jan

[iheartcats]

These are very good ideas!

No - I cannot draw but I looked up a body map so I'll keep a chart of where/when I hurt and what parts hurt. Such a good thought!

I personally don't want to try any new medicine right now. I personally feel like I'm on enough and am still trying to settle on my current mix before throwing anything new in. Especially when I know how a new medicine can mess things up. Doctors think I'm paranoid, I'm sure, but I've had too many bad experiences!

I'm seeing a POTS specialist in November so I suppose I can take what I learn to her and go from there. I just hope it's nothing bad!

[kayjay]

Cat Lady, Please let me know what you find out. I first got ill when I wass 25 now I am 36. I describe my pain by saying it feels like I was tumbled in the dryer. You know that sound when you put sneakers in the dryer... I imagine I feel like those sneakers. I have trouble with pain killers and am already on many meds. I also had a past positive ana test and for a while Hopkins thought that I had lupus. Anyway- I am sorry for your pain and would love it if you would share what you learn. Thank you Kayjay

[iheartcats]

I will let you know! They poor sneakers...I know what you mean! I just don't think this type of pain is 'normal.'

I hope the Rheumy or Specialist can pinpoint something. Advil doesn't seem to help much, so I rarely use a pain medicine.

[pat57]

he may want to know if your pain is symmetrical.

[mcaimless]

The rheumy should check you for fibromyalgia tender points if he knows what he's doing. Generalized widespread pain is often fibro. It is common with dysautonomia and often can be a result of poor thyroid function. If he determines you have fibro then he'll try to prescribe the usual fibro drugs, Celexa and Lyrica. I would recommend you get a good thyroid workup, including Free T3, Free T4 levels, thyroid antibodies and check your adrenal function with a saliva cortisol test before succumbing to the meds though-- they seem to work for some but not all and they have high side effect profiles like weight gain. Do your homework first, BigPharma loves to sell drugs for conditions that are often an offshoot of poor endocrine function, which is extremely common and treatable by simply replaceing hormone deficiencies.

[janiedelite]

I would imagine that since you had a positive ANA, he will want to do more labs to check for specific autoimmune diseases as many of them can cause POTS symptoms as well as pain. He should check you for fibromyalgia also, but I'd be clear with him that you'd like his help in investigating the underlying cause of your symptoms and positive ANA. That way, you may be able to treat the underlying cause much more effectively than just treating the symptoms.

Good luck and let us know how it goes!