Thursday, February 11, 2010


I'm still waiting for the results of my 2 sets of blood tests, and my MRI.

I did have to go back to the GP for a refill of the Parkinson's pills. At that time he also told me to increase my dose from 3 pills a day to 4 pills a day. My spasms are coming back, even with the increased dose. I can't imagine what I would be like without the medication.

I am tired all the time now, like I could easily lay down and sleep at any time of day, regardless of how much sleep I've had the night before.

I can't seem to keep my thoughts straight.

My muscles feel stiff and fatigued... More fun side-effects.

And I now have a fluttery feeling twitch in my right eye.

I would really like to know what's wrong with me, so I can start treating the disease, not the symptoms.


Achelois said...

Hi, I'm sorry you are having such torrid time. Sometime side effects of medications outweigh the advantages. I know I have EDS, osteoporosis, osteoarthritis, PHN. I also have a myriad of symptoms including spasms which have a variety of causes many of which I couldn't accurately define the cause of. A pain management course attended years ago the emphasis was on living well with a chronic condition and we were encouraged to stop the merry go round of tests or procedures most of us were undergoing & concentrate on living well with a chronic conditon.This worked for some time then I had a bone density test & realised had I sought medical advice years earlier I could have received treatment for osteoporosis earlier! Now I do take note of certain stuff and act further but other symptoms I put down to having a chronic pain condition taking the well meant advice given all those years ago. Spasms I find respond well in the short term to medication but on the whole their efficacy wears off eventually and its back to square one. This means I have to return to improving core stability (strengthening muscles from the inside out.The most helpful physical therapy I had was a 'good shoulder behaviour' course where my therapist patiently taught my unused muscles surrounding my shoulder & my back to'wake up'. They had switched off in response to terrible pain (the brain is a clever thing) this does not however assist the body to support the joints.He taught me v slowly us EDEser's having poor proprioception to wake these muscles to help support my shoulder which in turn helped with terrible excrutiating spasms in the back. I have disc problems to add to my tale but would gently encourage anyone with EDS young or old to continue with some form of physical therapy so that muscles don't atrophy even if waiting on test results or undergoing medical investigation. With EDS it can be hard to exercise in the way that 'normals' can but something is better than nothing and may help with pain more than any drug ever will. Even if all one is able to do is lie down, getting a good physical therapist to teach how to locate the muscles required to improve core stability & tighten these many times a day 'may' help spasms.Often in areas completely unrelated to the area targeted in core stability from the calves through to the neck. Combining a multi-disciplinary approach to pain mangement can help & is the only way I have been able to 'cope' with the unrelenting pain, spasms, twitching and myriad of unexplained symptoms that EDS seems to bring me. I hope you don't have to keep on waiting & you get answers because its not fair that you have to put up with so much. In the meantime I would honestly say that if a medication starts to to have many side effects and one starts to have more symptoms which may be attributable to the taking of it then it may be worth considering if its worth it.
I hope you don't mind me bending your ear thus, its just I have lived a long old time with this dratted EDS and I would hate for you to look back in time and say 'oh those were the months/years I lost myself to that awful med which I wish I had never taken in the first place'
I hope with some tweaking the Parkinson med gives you some respite but unless I am living in a bubble I haven't honestly heard of many people with EDS taking it as a treatment. I wonder if perhaps targeted physical therapy (even if very gentle) would not give you more relief in the long run.
nb. I do accept that after investigations you may find what is causing the problems but mri's particularly have a habit of not showing enough to explain away the pain experienced by the patient.
Take care and a gentle virtual hug

BubbleGirl said...

Thanks for the comment (longer than my post).

I'm not sure I've explained properly. The spasms aren't the crampy kind of spasms, they're the twitchy kind. The two days that I was having them really badly, I nearly stabbed myself with eating/writing utensils countless times. On my way home from the doctor that tuesday, I nearly drove my car off the road, because of a spasm.

At work, I could barely hold the phone to my ear, or write down information without scribbling all over the page.

I tried to push my glasses up my nose, and I punched myself in the face.

In this instance I doubt I'd be able to function enough without the pills to be able to do my job.

There are many things I won't go to the doctor for, including UTI's (cranberry juice is treatment enough), or cuts that are big enough that they should be stitched, yet not so big that I might bleed out. I reduce all of my own dislocations, and it's taken me a long time to convince myself to push my doctor into testing me for Chiari and Celiac's.

I am still hoping that the doctors can figure out what is causing the spasms (aside from the EDS umbrella), and that I will be treated for that, instead of just medicating me to alleviate the symptoms. Certain things that could be causing the spasms are curable, others are manageable.