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Central Pain Syndrome and Pissed


#1

I am Kreasi, 50yo female. I went to Rheumatologist for first time trying to get diagnosis. Primary Doc suspected Fibromyalgia. I made a diary and list of symptoms. I have Fatigue, multiple areas of deep aching pain, breathlessness, IBS, Reynaulds, headache, tender points, brain fog, insomnia and awake unrested, etc for 2 years now. Its episodic. It lasts days to weeks. In between I feel great. I am fat but eat healthy and walk my dogs 40 minutes a day regardless. I’ve had all normal blood tests, checked heart, lungs, thyroid, no diabetes, no allergies, no gastro issues, and even bipolar/depression. Nothing abnormal. I quit looking for an answer… all the Doctor’s made me feel I was just fat and imagining it. I figured it will either get better or worse and then maybe we will find an answer. This year I have had very very few good days.

He ignored my diary, poked me a few times, had me flex my knees and touch my toes. He started talking about Fibro and how pain meds aren’t the solution. I told him I am not seeking pain meds but help for the overwhelming Fatigue because it has me unable to work more than 10 to15 hours a week.

He talked about which came first chicken or egg … said I probably had Fibro but its really part of a Central Pain Syndrome. I told him its totally dibilitating at times. He suggested Aqua-therapy and Cognitive Behavior Therapy to learn to deal with the pain and fatigue. Oh yea and he had to mention the low Vitamin D from 3 months ago that I have treated with 50,000 units a week since and that everyone has.

My visit summary only mentions Central Pain Syndrome (CpS) and never mentions Fibro. I feel dismissed as usual. Is CpS just another way of saying its all in my head? Online it sounds serious but he didn’t order any further tests. I asked him via email to put Fibro and more details in my record… I doubt he will. What a waste of time and energy.

I am so sick of Doctor’s but sick of being sick even more.


#2

Have your PCP find you another Rheumy. You Need to be your own advocate. I myself have been accused of starving myself because I weigh too little. I have gone back & forth to numerous ENT’s GYN’s N’s. I finally found a Neurologist in SD. She looked at all of the tests that I have had, she listened to me & told me I had symptoms that could match 15 or 16 possibilities & she begun the process of ruling them out. It all came back negative, except for 1 which was a genetic testing & my part of the test would cost $1500 or more & of course I couldn’t afford that. She told me that all she could do was help me manage the symptoms & my PCP could do that. Thru her my PCP found a Rheumy that diagnosed me. If you can, get blood work done every 3 or 4mos. doing that gives a pattern to the MD’s of your unique system. I Know this is Frustrating & sometimes I punch a pillow & yell & bawl. Or I come on here & try to help others. I hope this helped. Peace. Light & Love. M


#3

Hi Kreasi,
I’m sorry you had that experience with that rheum doctor. Unfortunately there are those “professionals” that don’t believe the patient They think we are crazy, we are drug seekers, we are trying to get out of working bc we are lazy,etc. You and your pcp need to find another rheum doc. And if that one doesn’t want to listen to you then keep looking. There has to be someone out there that actually listens to the patient. Can’t your PCP diagnose you?
My sister has fibro and she has trigeminal neuralgia. She had to look and look for a dr that would believe how much pain she was in bc of the T.N. she finally found someone and gets injections to her temporal areas. So there is light at the end of the tunnel. Just keep fighting, don’t give up and don’t settle. Nobody knows your body better than you.
Oh and on Pinterest I found this daily fibro symptom log. Its awesome. Something like that would be good to keep track of how you feel daily to show the doctors.
Good luck!
Andrea


#4

Hello Kreasi!

Thank you for being so open and honest about your struggles and frustrations. I know sometimes you just get to a point when you feel like you just can’t talk about all your issues anymore because no one seems to listen, and you honestly do wonder at times if you are truly crazy. I have been there! It took me years to get diagnosed with Fibromyalgia. I went through four primary doctors before this last one finally was receptive enough to hear my pains and honestly look at the numerous tests that I took which all came back “normal”. It is SO FRUSTRATING to feel that no one listens to you or believes you.
I just want to encourage you to keep voicing your concerns! Don’t give up and keep speaking out for your body! I am a full time student and what really led me to the path of being diagnosed with fibromyalgia was the insane fatigue I was dealing with. I was missing so many classes and didn’t even feel safe to drive myself it was so bad.
It was also suggest to me to do water therapy. I have to say, that is what truly saved me or at least started me on the right path of understanding my body and what it needed. I have also been diagnosed with PCOS and IBS for most of my life. With those syndromes comes crazy weight gain (and inability to lose weight) and with the IBS, well… that is one brutal syndrome to deal with. I have researched a lot on these topics and for me I have found following a gluten free/dairy free truly makes the difference in how I feel and how much energy I have.
I understand that what works for me may not work for you. But I know how it feels to be in that place where you are screaming for help and no one hears you or listens to you. I honestly cried to my mom a lot thinking I was crazy. I had to learn to listen to my body and do what is best for MY body. I did a ton of research myself and started a long journey of trial and error till I found the right balance that helped me. Since I have found this balance that seems to help me I have lost a lot of weight, I feel better and I’m sleeping better, and I can now manage my pain a little better than I did before. I also have always had issues with low vitamin D which is always really bad during Ohio’s brutal and long winters. I try to enjoy as much sunshine as I can during the summer and it does help! My husband also bought me a pool that I float in when I have horrible pains and it is a life saver.
I just want to encourage you to keep going! Don’t be afraid to continue getting different opinions or looking for new doctors who actually hear you. They are out there, just takes a long time to find them sometimes. To be honest, I had a referral to an arthritis specialist and he did absolutely nothing for me and I quit going to him after the third session. I am sticking with my current primary doctor who was the one that diagnosed me with fibromyalgia the first time he met me. Just took me years to finally find him.

Keep up the good fight and keep on advocating for your body!
Let that feeling of being sick of being sick drive you to find the answers you are needing!

Ariel


#5

Thank you everyone for your responses and. support. Waiting for a Neuro consult in a month. I am showing most of the signs for Myasthenia Gravis (MG). My Opthomologist saw my eye was droopy and it has sent me down this other rabbit hole. Wish me luck as MG is extremely rare and not too many Neurologists have any real experience diagnosing or treating it.


#6

Well … yes and no. It’s all about our nervous systems, and the Grand Central of the nervous system, of course, is the brain. I guess you could say “Life’s all in your head” too!

Kreasi, I’m Seenie and I work for ModSupport on Ben’s Friends. We have forty-some communities like this, and two of our newest are CentralPainSyndrome and MyastheniaGravis.

We’d love to have you join those new communities as one of the first members. There aren’t a lot of people there yet, but there is a reasonable bank of information and helpful links on both communities.

We’ll be looking out for you on both! Meanwhile, as one who travels all over the Ben’s Friends universe, I can tell you on very good authority that all of us are sick of being sick. But misery loves company, and you’ve planted yourself amongst the best. (We think, anyway!)

Seenie from ModSupport