Are intense headaches part of CRPS?
 

On top of the CRPS and resulting gastroparesis, I now also have chronic INTENSE headaches that I wake up with and last until roughly mid afternoon. The pain is behind my eyes and quite debilitating. Does this happen to others with CRPS?

I don't know if I should see a neurologist or pain doctor or what. Any recommendations or information is appreciated. Thank you ahead of time and have a spoonfilled day!

I get these sometimes but almost always as the result of something else. I always say get it checked out because even IF CRPS could be the cause, it could also be the symptom of something else and possibly easily treated as well if it is.

My neurologist said it is all part of it. I wake up early AM with an upset stomach, throbbing feet, legs and hands. Nothing helped the headache that seemed to be a part of this and the amplified pain, until I paid for botox on my forehead over a month ago. I have had almost a month without headaches, the first long cessation in 4 years. I don’t think it is a coincidence. I think we probably grimace in our sleep from pain and tension.

I know that the severity of my pain is in proportion to my stomach woes, which are in tune with the weather. I can tell without looking outside how overcast it will be.

You may have to try several meds first, but be warned they can upset your stomach. Ask for suppositories or sublingual meds. I vomited from the triptans. Indomethacin did nothing.

My pain doctor sent me to the neurologist, which is where you should start, unless your pain doctor agrees you have global CRPS and will treat it. Most know very little.

I wouldn't attribute everything to CRPS. You can get different issues, stand-alone issues that need to be dealt with separately. It is therefore dangerous to just whack it all in with CRPS and think it comes with the territory.

CRPS is a stand-alone illness.

I developed Menière in later years, and I am thankful that every doctor I went to examined me from scratch; or else it might have been all chalked up to CRPS.

There is a danger in that!

I also have been having migraines since puberty (age 14) and I got CRPS age 23; so I know those aren't related.

It is more of a puzzle when you develop that after the fact.

But don't let doctors make it easy on themselves and chalk it all up to what you already have.

CRPS has its own symptoms, and headaches, I don't think are part of it. But don't quote me on that, I am no doctor. Just a patient with almost 23 years worth of experience and her own medical history.

CRPS is thought to be a heterogenous syndrome, not one disease. IOW, it can have different causes.

In my case, it would appear mine is linked autoimmune problems. I have some more common or at least more well defined autoimmune problems (like Addison's and thyroiditis) and some rarer ones. Like you, I have gastroparesis. I also have small fiber neuropathy, POTS, and Ehlers-Danlos syndrome (hypermobilty type). All of these last ones are linked to the CRPS. People with CRPS are more likely to have any of all of these than the normal population. So in this way, I don't consider CRPS a stand alone disease in my case. IVIg actually helps my CRPS, POTs and gastroparesis, adding more evidence that these diseases are linked and autoimmune in my case.

I, too, have migraines. I think they are considered more common with CRPS but they were diagnosed separately.

You should go to the doctor of course but if it's not obvious, mention the CRPS. The doctor may not know what CRPS is but some of my linked to CRPS diseases (any of which can occur individually) were diagnosed more quickly because the associations I mention.

In short, yes, I do get severe headaches.

The meanest of my pain flares will cause a headache. In fact, I have one now and I swear it is because of how much the rest of me hurts. I think it's a response of some kind.
This flare hurts. Blurry vision is common but current vision is blotto. It takes a lot of effort to proof resd.

I think this requires more study. Unless the studies are out there.

I know I have had stand-alone migraines as of age 14, so I *know* they are not related. I developed RSD/CRPS age 23.

So it's perhaps easier for me to make that difference, say than it would be for someone who developed migraine in later phases of their life.