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Fybro&Graves Disease New here...

Nov 22, 2015 8:12 AM

I've lived with fybro for 6 years now. Manage it pretty good... I was diagnosed with Graves Disease after calling 911 because my bp was high but my heart was 179 BPM. I've had terrible sweats hot flashes and panic attacks due to this. Also have a vascular necrosis. Had a hip replacement in 2013.. So I'm wondering if anyone out there suffers from fybro & graves and can talk or give me pointers on how to cope with this. I'm being treated with beta blockers until another test is done!

Nov 22, 2015 6:28 PM

JenniC, first and foremost, I would like to welcome you to our family community. I am glad that you found us. We are a zany, tight knit and caring bunch of people who want to help others cope with their chronic pain. I know that it can be a real nightmare to live with. Once you come to accept that this IS your normal, you will be able to still get joy and fun out of life (you just have to do it differently and make sure that you don't overdo things). I have Fibro and I was diagnosed with Grave's Disease several years ago and they chemically removed my thyroid. There is nothing left of it. I was forced into menopause at the age of 36 because of it, experienced what the endocrinologist called (a "storm") and I felt so horrible that I really felt I'd rather die than live like that. I have since been diagnosed with DDD/DJD, CRPS/RSD, GERD, bilateral valgus deformities of the knees, cervical spondalytic myelopathy, scoliosis, lordosis, SI Joint dysfunction with fractures and a laundry list of other diseases diagnosed over the recent past. I wish I had some magic wand of some sort that I could wave and make everyone's pain would go away forever and nobody would have to deal with this any more. I hope that you settle in and find us to be helpful, supportive, informative and understanding. Sending {{{Hugs}}} and prayers that you have a good night and a peaceful Monday.🌻🙏🏻

Nov 22, 2015 6:39 PM

Thank you Alwayzinpain... I have excepted the fibro. I manage that pretty good... I just cannot deal with these emotions. I had a hysterectomy 10 years ago I'm 37. I manage my pain from the avn too. I've got so many tricks.. That help me.. I to have SI dysfunction, mylopathy with stenosis in cervical, thoracic, and lumbar. When I finally did except the fibro n how much my life changed I was good. 2 months ago I got sick. Tired stayed tired... Hot sweaty... U know since u have it.. I can't write this wo tearing up.. Yesterday I got worn out getting dressed mid way I sat on the floor and balled coz I am so tired that putting clothes on is hard...

Nov 22, 2015 7:04 PM

I hear that. There are times I get in the shower and have no idea how I am going to get it done and then get dressed and take care of my ferret. It's exhausting to always be so exhausted. I have difficulty in dealing with the emotions, sweating, palpitations, nigh sweats, feeling anxious and very depressed and useless. These are all normal and when they get your Synthroid (Levothyroxine) at the proper level, it may help you feel better. Essentially, even though you are on the other end of the spectrum and have hypothyroidism, you still have Grave's Disease and It's really difficult to say the leastz I am here to walk by your side (as will be many others here). I have two shoulders to lean on, two hands to hold when you're scared, two ears to listen when you need to talk, two eyes that will cry with you or shine with yours when you're happy and a heart that aches when I hear that my pain family members are hurting and fills with joy and celebration when they have a good day or something wonderful has happened. Hang in there, you got this!! And most importantly, you don't have to do it alone because we are all here to help you through and we "get it". You will have a huge support system here and never have to worry about unloading things off your chest. There are no judgements here. So, once again, welcome and I am sorry that you are having such a hard time. 💕🙏🏻🌻

Nov 23, 2015 1:43 AM

Thank you Alwayzinpain. I to have all those same symptomes with graves. Along with insomnia.. Ugh I swear the emotions hot sweats, night sweats, fast heartbeat. Anxiety n crying is worse than my pain..

Nov 23, 2015 7:34 AM

OMG!! I just said the same thing to my Mother the other day. That I could almost tolerate the pain better without all the mental issues. The anxiety is horrible and it doesn't really go away when I take Ativan. I am in menopause as well. My body was forced into it when they took my thyroid, they tried hormones to bring back my cycles because I was 34 and in child bearing years. They didn't work and I told the doctor I was not taking any more hormones and taking chances on getting ovarian or uterin cancer. I went 13 years without a cycle and then out if the blue it came back. Now, I'm in menopause again, skipping sometimes 6 months at a time and then getting a cycle. The insomnia, night sweats, chills, aches and mood swings are doing me in... Not to mention the hot flashes that make me want to put my head in the freezer!! All that with the daily, chronic pain makes for a not fun time. However, with my pain family and just taking one step at a time, I get through. It gets better, it always does. The it gets worse and then better and then worse. It is what it is.💕🙏🏻🌻

Nov 23, 2015 7:42 AM

I called mom crying this morning to please help.they've. Not started hormones yet. Just proponolol. I been telling my gyn there was some type of hormone imbalance. Somehow, the blood work always said no. Weird right. I think she's going to have to write me some adivan. They gave me that in the hospital. Did help a little bit. But I'm sure NY family would appreciate that!

Nov 23, 2015 7:52 AM

I'm from NY... Long Island actually. With the holidays coming, the winter and gloom of the winter sky on the horizon, it makes it harder for those who suffer with mental issues along with their pain. Unfortunately I was diagnosed with depressive anxiety disorder long before I was in the pain I'm in. I have found it's only amplified since I've been in pain every day. The gyn gave me the same thing they gave you which is supposed to bring your cycles back. It would bring one and then it would stop again. I said I wasn't going to take them any more.

Nov 23, 2015 7:59 AM

Wow... So true I also was diagnosed depression and anxiety... About the same time as fibro was diagnosed. I contribute that to being in pain. Before I moved to Indianapolis I traveled a lot. Camping boating swimming. Now I'm swim as much as possible. Weather permitting. Water and the su. Help with my ain so very much...

Nov 23, 2015 8:00 AM

I'll msg u after mom leaves if that's ok. I have some questions that are embarrassing for me..

Nov 23, 2015 8:01 AM

That's awesome. I wish it were like that for me. Sometimes if I sit by the window and have the sun on my back it helps a bit or I find it soothing but I will then get sleepy and sluggish.. LOL!!

Nov 23, 2015 8:01 AM

You can sure do that and no worries. There is nothing too embarrassing for you to ask me

Nov 23, 2015 11:42 AM

Omigosh for some reason I cannot pm you.. Weird alwayzinpain...

Nov 23, 2015 1:15 PM

JenniC, welcome to our community family! I'm sorry to hear of your recent complications. I have hot flashes, cold chills, and anxiety, depression, Sjogrens, fibromyalgia, and hypothyroidism, among many other issues. I stopped work in 2010 from mass surgery and multiple added complications, and my health keeps deteriorating. As always said, accepting the new normal is key. I just got dx with the sjogrens, hypothyroidism, this year and I'm still learning coping mechanisms. This community of people, I like to call family/friends is so filled with knowledge and experiences, I'm certain others will have advice to offer. I'm not familiar with Graves. But I will add you to my prayers. Hugs, and blessings for a good day! 🙏🌼

Nov 23, 2015 1:27 PM

JenniC, I don't have the pain Companion App that is why you can't pm me. I'm sorry hon.🌻🙏🏻

Nov 23, 2015 2:16 PM

Alwayzinpain.... Ok my question was pretty private.. However other ppl will have the same question at some point... You said graves put u in menopause... I've already not had a cycle in 10 years cause I had to have uterus removed...does this affect other things like breast tenderness, change in discharge, etc.... Did you notice any of this?

Nov 23, 2015 2:18 PM

Flappylady81 thank you

Nov 23, 2015 6:58 PM

Yes, I was still getting symptoms of getting a cycle that never came. Many women that have no thyroid end up with other issues. Since you had a partial hysterectomy your situation is a bit different than mine. Perhaps others who see this post will have other information for you. There is a thread on here about pen pals and many of us provided our email addresses. In case you can't find the thread, my email address is Ladygirl94@aol.com and this is for any of my fellow pain family who need or wish to reach me. It's ok, I'm here for a gone who needs me. This pain family has helped to heal my head and heart and I love to help my extended family in any way I can. {{{{Hugs}}}} and prayers. 🌻🙏🏻

Nov 23, 2015 7:05 PM

Jenni, when she says always, she definetly means always. No ifs, ands or buts about that. And yes, the Provera did the same thing to me. Have a cycle, go 3 months without. And I'm not even close to menopause yet, says my gyn.

Nov 23, 2015 7:13 PM

Awww, thanks Amanda!! I really appreciate the kind words. I try my very hardest to never let anyone down. If I say I'll be there for you, then barring me being on my deathbed or worse, I WILL be there for everyone. Y'all have helped me many times since I found this wonderful community and I have to say, it's a great feeling. As I've said before, I'm
Just me. What you see (or hear in this case) is what you get. I am who I am and I think that I've found this community to do just that... Help people. I think it's a good purpose to have in a world where there is so much grief and senselessness. Love and prayer bathed {{{Hugs}}} to all my peeps.💕

Nov 23, 2015 7:17 PM

What is provera ladies?? I'm not on hormones yet. I see the endocrinologist wed 8am eastern time. For now she put me on a beta blocker to help manage the tachycardia.

Nov 23, 2015 7:19 PM

Alwayz, thank you so much. Your convo has helped a lot.

Nov 23, 2015 7:34 PM

Jenni, my apologies. Half asleep right now. Provera is a medication to regulate your cycle. That being said, I've told my gyn I want off already. For me, it really does nothing other then making me a bitchy, crying mess. But if it helps to keep the bleeding at bay, then is believe it might be worth it until January. O with that being said, I don't have Graves' disease or fibro, but I'm no stranger to Gyn issues or chronic pain. Trust me, I get it.
For me, It seems like everything has gone to hell in a hand basket over the last year with the gyn issues. 7 times in the past 2 months to their office. But I've rattled on far too much now. My email is amandamiddleton98@gmail.com if ever you need me.

Nov 23, 2015 7:51 PM

The provera is a hormone that they endocrinologist/gyn will put you on for usually 21days (if I remember correctly, it was a long time ago) and it is used to make your cycle come back and continue. Generally, what happens is after the last pill, within up to 10 days you should get a cycle snd then it SHOULD come back each month from there. They wants me to continue taking it because it was only bringing on 1 cycle and it would last 3 days and stop and then I would get no more. After reading about these hormones and others like them, I found that like many things, they could cause uterin or ovarian cancer. Being 34, I wasn't willing to take the chance and said whatever happens to my body "naturally" would have to do and I would take my chances. Well 13 years, no cycle, then BAM... It came back!! So, now I am in menopause again and it's such a pain in the ass having to always be "prepared" because I never know when it's coming. I almost got to the one year mark (I was at 8 months), and I wasn't feeling well and got a cycle. I was so mad because I was so close. Oh well, it will happen. I just wish it would happen faster because I'm about fed up with the hot flashes, night sweats, always having to be "protected", among other things. Fortunately, it's not like when I was younger so sometimes it makes it a bit more tolerable. Hope this was helpful to you. If for any reason I have the medicine wrong, I apologize but I do know that another family member will come forward and give you the "right" info. {{Hugs}} and prayers to you.💕🙏🏻🌻

Nov 23, 2015 8:09 PM

Yes Alwayz, it does depend on what your endocrinologist/gyns protocol is and what they have you on it for. Like for me, the dose is 10 mg daily for 90 days, come off for 7 days then start it again. It truly is a pain in the ass, because for me when I get a cycle, you'll know about it. Bitchy and crabby are not even words to describe it. Hot flashes, night sweats, etc do NOT make for a happy me at all. Oh, and don't even get me started on the back ache from it.

Nov 23, 2015 8:49 PM

I sure here that loud and clear!!

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