Skip to main content

I think I need an interpreter

Honestly, I feel like I forget more than I remember when I go talk to my doctor. And then hours later I'm always like Damnit! I forgot such and such Again! I need to have an interpretor. They should make an App for that. Partially it is just the fact I still have this status migraine... so a crapload of pain. Partially it is the topamax which is just not good for the brain memory. Paritally it is that I'm there for something specific and he has like I swear a two minute window for me... you simply cannot rush someone with fibro brain. You distract me for one minute and whatever else I thought I ought to mention goes out the window.

There is sort of a pile up of things I ought to mention. You ever wonder if one of those things that has been a been nagging symptom... the is likely just a 'fibromyalgia thing' might really be something you should bring up? I do sometimes. I'm not a hypochondriac or anything. I ought to be considering how many bloody comorbid conditions these people insist on diagnosing me with... but I figure FM covers a lot of ground, so I likely don't worry enough.

Pain is pain right?

How do you know when pain is a pain you should worry about when you have pain all the time? Most people are really fortunate that way. They feel pain that hurts a lot or persists and of course they go to the doctor. I have no freaking clue. Is it normal pain? Is it a flare up? Is it a side effect of a medication? When is it abnormal for me? That also was a concern with chest pains... was it chest wall pain, asthma lung pain, or angina pain, from the stomach... sort of had to learn where the pain was coming from and whether it was serious or not. The topamax side effect of chest pain... have not figured out yet. Abdomenal pain... tricky one, sometimes I can't figure that one out myself.

I've been having this back pain for a bit now. It was aggravated a lot by yoga and walking and nothing really. It just hurts. It hurts to just try and sleep. It is the sort of back pain where you feel fine bending forward but it is painful and difficult to stand straight or bend it backward. It is very tender in the lower back, but over a broad area if you were to poke around. It will get a lot worse, quicky, when I walk anywhere. Yoga was not helping. I assumed FM flare up from the yoga, but it did not lessen when I lessened the yoga... it has remained consistent. So I assumed one of those random and highly painful FM flare ups even though I have never had it in the back before. But what do I know about back pain? Nada. I know usually it should come from an injury. I know it should be better with rest, but I have real troubles sleeping with it. I know nothing has helped with it... not creams or back pain pills. I know that I get tingling and numbness in my hands and feet... but that is hardly unusual is it for migraines and FM, or even a side effect of topamax. In the scheme of FM... its pain and I immediately put it in that category. But reflecting on it, back pain can rather be specific so I thought I should at least get it looked at. But I forgot. Of course.

Then there are the Other symptoms. There are just too many of them. Some seem so minor as to not even worry over. Like my sudden allergy to shampoo. Weird, but not something I mentioned. Would a normal person mention something like that? I don't even know. It seems so minor. Then there are the major things that I have put up with for so long and have mentioned to him several times... but I guess he does not take me seriously enough. Like IBS-D. That really is serious to me. I mean I am really beginning to hate food... and I try to take vitamins, but apparently I can't digest them... and every medication seems to upset my digestive system. He seems to focus on the nausea and stomach pain, which is minor compared to the fact that nothing stays in me long enough to actually be digested properly. This really is getting bad. I keep trying diet changes and all sorts of things because all the things he does make it worse.

Point is I never seem too get these things in. They are imporant... obviously they are. Eventually I will remember. Then he will ask how long the back pain has been going on and I will be like... um, I have no idea. All the small minor things... never get brought up. And who knows what is missed there right? Major things I will eventually specifically make an appointment for when I go for refills. One at a time. But I can't help but feel that the FM is a little... not dealt with. Maybe these digestive issues have been ignored for too long. Hard for medications, vitamins, nutrients... anything to get in me if my digestive system is this out of whack... and how can I get a crip on the migraines if that is the case? I get doctors are intimidated by FM as in the Whole picture... but this part of the picture is what makes me so ill when I get these status migraines or have these side effects. And its not good.

Anyway... I have to find my phone and add some reminders into it... its the only bloody way I can remember these things.

Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.

__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

Getting through the high intensity pain flares #Blogboost

The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
We can and should rest and get through it the best we can. Here are some of the things I do to get through it.

Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…