Mixed Connective Tissue Diease/ Fibromyalgia/ Vascuelitis/ renods?/

I have some questions/ and yes I know I need to find a new primary Doctor. This is not as easy as it seems finding a new Doctor. Most won't take on a patient with autoimmune. Something to do with pain management. I do not take any pain medications except Tylenol. I am on high blood pressure medications. I take Lyrica. nexium for reflux, and warfarin for blood thining.
I have Mixed Connective Tissue Disease, Fibromyalgia, Vascuelitus, Renods, Lupus inhibitor. Migraines. Continues sinus infections and swelling. Along with cluster headaches and tension headaches.
So as you can see I am on only one medication to help my multiple diagnoses except ONE Lyrcia Tha is it.
I know very little about MCTD, Fibromyalgia, Lupus inhibitor, Vascuelitus, Renods.
My primary Doctor diagnosed me with Renods about 3 years ago. But with the quick appointment yesterday took him 20 minutes to up date my medication chart and renew prescriptions. I started to tell him about the pain in my feet and hands mostly my feet. He said wish I had the time but I don't I am already 2 patients behind now. But what you have described is not renods. I don't know what it is............................. I was left with a blood test for vitamin D and B12 test that was it......................... So I guess I should find out more about the illnesses I have only one this primary Doctor diagnosed. Thank God!
So I guess what I want to know is where can I find out about these conditions?
I don't even know what firomyalgia dose or is caused from. I have no idea what the long term effects are to any of these.
Thanks,
Meema
P.S.
My symptoms are joint pain in my hips neck shoulders, knees, ankles, of course headaches daily and sinus pain then my feet burn sharp pains in my toes, and feet, Then the fatigue it is out standing. I can think Oh I am going to clean out a closet and just walking across the living room I am beat like there is no tomorrow. Then I have shortness of breath.Sometimes it is ok and then others I can not hardly make it up the stairs. I was started on the Lyrcia by another Doctor Spine and sports guy. After the first week my feet stopped burning and most of the pain in my feet was gone. Then after about 3 weeks it all came back, My hips feelt better and my neck and schouldres were doing so much better and now it has too all returned the same.
Thanks again.
Meema

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there are specific tests that a rheumatologist can perform to see if the pain is from fibromyalgia or from other cause such as arthritis. he can also prescribe additional medications as required. do your hands turn very pink or blue whey they get cold and become painful? this is what Raynauds is and it can impact your feet too. this is frequently seen in Rheumatoid Factor Positive disease processes. there are specific blood tests that the rheumatologist can order to look for various causes of underlying systemic disease.
I have fibromyalgia and I take a drug that works similar to Lyrica called Gabapentin. this is helpful with neuropathy which is causing pain. I also take the drug Ultram which blocks what is known as the 'p factor' found in fibromyalgia. because I have constant muscle contractions I also take the muscle relaxer Flexeril. not all of my pain goes away but I can live with it. Narcotic drugs do nothing for fibromyalgia nor do Non steroidal anti inflammatory drugs such as Aleve, etc. if you have joint pain from arthritis then the NSAIDs would help with that.
you might also look into other drugs for high blood pressure since you also have headache. my neurologist changed my medication for this.
with lupus present, your eyes should be examined by an opthalmolgist annually as changes can take place inside the,\
severe dry eyes can also result in inflammation of the cornea. there are medications that can help you produce tears and help prevent this with additional things like plugs to be placed in the drains of the eye to keep fluid from evaporating etc.
you might ask to be checked for amyloidosis which sometimes appears in lupus and RF positive patietns which can cause arteritis and heart problems.

wish you the very best,
mike

wish you the very best,
mike Bartolatz

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Mike,
Thanks for the information. I was also hoping to do some research prior to a rheumatologist May 24th , I thought if I had more information I could have a little input instead of a Doctor walking in and out with out getting answers to my questions. but you have given me some questions to ask too. About some more blood testing. My hands turn real pink red when in cold and hurt to the point of locking up on me. Along with sharp pain, My feet burn tingle and sharp pain and turn red pink as well. My hands and feet swell up too.
Thank you
Meema

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I hope you find some answers soon. I have fibromyalgia as well and went through the horrible doctor to doctor thing were no one would listen. I had spinal taps and all. They did every test know to man and then I got the DX of fibromyalgia. I'm on tramidal and soma and get tremendous relief from them. I was on arthrotec but am unable to take it anymore due to my resent dx of Crohn's. I find when I take Tylenol it seems to make my legs burn with pain. Advil worked better for me. I'm not so sure you can take that with some of your meds. I wish you the best of luck on this long journey to a dx and treatment. Hang in there. There is a right doctor for you and I really hope you find him or her soon.

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i read ur profile i have exactly what u have and its been almost 2 years mctd and vasculitis were thinking of dm dermomytosis its probably spelt wrong o well. and everything u feel is true i feel the same thing my whole body hurts every day right now my esophugus hurts so bad im down to ice chunks but as soon as i get my medical card im going to my tummy doc i need a endoscopy and a colenoscpy done again. last time he had to strech my esophugus. and its part of mixed connective tisue dease. and really bad bile problem. food isnt my friend well i just wanted u to know u do feel the way u do its not in ur head. u take care

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TRY FINDING A INTERNAL MEDICINE DR FOR YOUR PCP....THAT IS WHAT I HAVE...NOT GENERAL PRACTICE...WE
DRIVE THOSE FOLKS NUTS BECAUSE WE TAKE LONGER THAN 15MINS TO FIGURE OUT WHAT IS THE RIGHT
COURSE FOR US. I HAVE A ENDOCRINOLOGIST ON STAND BY IF MY PCP DOESN'T HAVE THE ANSWERS I NEED
NOW MY PCP IS VERY SMART SO I AM VERY LUCKY...BUT MULTIPLE OPINIONS IS NOT A BAD THING AND THEN
YOU CAN CHOOSE WHAT SEEMS RIGHT FOR YOU...SEE, WHEN SOMETHING GOES WRONG...YOU ARE THE
FIRST TO KNOW...SO YOU NEED A DR TO LISTEN...OR IN MY CASE...I TYPE OUT EVERYTHING THE NIGHT BEFORE
AND JUST LET HIM READ IT...THEY READ FASTER THAN LISTEN AND I AM TIRED OF TALKING...MY BEST DR SAYS
"GOTCHA" WHEN HE GETS THE PICTURE AND THEN I CAN STOP EXPLAINING MYSELF TO HIM...GOOD LUCK...BUT
TRY TO BE A HONEST AS POSSIBLE...YOU WOULD BE AMAZED AT HOW MANY PEOPLE GO INTO THE DRS AND LIE
ABOUT WHAT IS GOING ON...SO THEY THEN HAVE TO WASTE TIME TRYING TO FIGURE OUT WHAT IS REAL AND WHAT
IS NOT...GOOD LUCK AND GOD AND BLESS...LOVE AND PRAYERS, DIANE

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http://www.healthgrades.com/find-a-doctor

Hi meema,
This site might help in picking out doctors as they are reviewed by patients. Search rheumatologists.....

Any good rheumatologist should run a CBC, check for ANA, Rhuematoid Factor(RF),SED rate, ACE, VITD, calcitriol, serum calcium, urine calcium, Xray painful joints, and test for antibodies should your ANA come back positive. If you do not get a comprehensive workup, please do yourself a favor and MOVE ON to the next doctor. We cannot afford to waste away while someone who calls themselves our 'caregiver' twiddles their thumbs. These doctors work for us, when they do not do a good job, they need to be fired just like a mechanic, plumber, or anyone else who works for us and takes our hard earned money or insurance(still our hard earned $). What is renods? I am glad the Lyrica is helping. It helps me but I cant stand the side effects of sleep walking and super dry mouth. You may need to have PFT, or pulmonary function tests done in order to find out the cause of your shortness of breath. Good luck meema. Approach this like it is your job. Whenever you have free time or feel up to it you should research online about your symptoms, conditions you are diagnosed with or may have, and reading, posting, replying to forums such as this one here. Give your health the attention it deserves as no one else is going to be as concerned about it or advocate for it like you will. Best wishes meema.

Kristopher

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I want to thank everyone who has responded to my post. I have an appointment with a Rummy on May 24th I too have to have my esophagus stretched every year I need to go have it done again I strangle for no reason at all. It is getting bad now. So thanks for the information I can take with me to the Doctor's, I like to be empowered when I go. I am still looking for the primary. But that too will happen. I just have to stick with it. I am finding most Doctors receptionist will advise you on the phone that their Doctors do not do pain management at all. As soon as I tell them what my diagnoses is. I have never been on pain medication yet. I am stubborn. I am afraid of using drugs. I know someday I will have no choice. There are days and nights that I am just impacted by the pain. Being so tired is another problem I know we all face every moment of the day. I just had our Grandson this week end and boy I was so beat by dinner time each day. But I made it threw. I hope he had a good time. He will be back at spring break so I need to try and be ready. I was laughing at myself yesterday I was hobbling into the movie theater, I looked a sight cause my feet and hips hurt so bad I was almost dragging my left foot. but we saw the movie and had a good time. Now I have to set up for another visit. Like my husband says rest rest rest when you can. Thanks everyone. I do appreciate your time and thought for me.
Meema

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Meema, you and ray222 have had your esophagus stretched. I have had an endoscopy and a colonoscopy. I was told that my esophagus was enlarged, so that is why I am having a reflux (it is not acidic, but just foamy saliva from my stomach). Some times I have to drink water to help my food go down. I get choked easily, when eating. I chew slowly and long. Are you having any of the same symptoms?

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I do take medication for reflux.. I have had it for over 20 years. I have a hard time eating I can not have a conversation while having a meal cause I will choke bad to the point people want to call 911. I can choke so hard the skin on my chest feels like it is exploding or all the veins are? After my stretching it stops for awhile. I am not sure if they do that procedure more often or not.

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