Losing Strength - Personal Stories - Living with Graves Disease

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Losing Strength

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#1 Umi

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Posted 24 October 2017 - 02:40 PM

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I cannot remember a day I woke up without pain.

 

  As a younger child I experienced consistent muscle pain, constant swollen lymph nodes, and headaches grew into intense chronic migraines as a teen. I have always been extremely prone to infection, which resulted in me having multiple sinus and ear infections and lost some of my hearing. I had my daughter when I was 18 years old (please no judgement her father was my first love, and my daughter is the reason I keep going), my pregnancy was extraordinarily painful. I had trouble moving on my own, fainting spells and had to eat 5 meals a day plus 3 protein shakes a day (plus vitamins) to gain the healthy weight needed. After my pregnancy I broke out into shingles all over my face and it started to spread onto my eyelid. The walk-in clinic doctor said I was the youngest patient he had ever seen with shingles, especially on my face and threatening my eye sight. I have weighed 95 lbs for the past ten years. I tried nearly everything to improve my health and gain weight, but everything I've tried my joints hurt more, my muscles hurt more.. I couldn't gain weight no matter what I tried. I'm accused often of having an eating disorder. I cant afford the amount of food I need. If I miss any meals I start to drop down to dangerous weights around 89 lbs. My blood sugar drops, my stomach cramps worse than any period or labor pain I've ever felt. My parents never believed in doctors or dentists so it took me until my daughter was about two to make an appointment with a chronic illness doctor, I felt like she didn't listen to the words I was saying. The doctor recommended some lab work and said it came back pretty healthy. This was a smack in the face. It was around this time that my right eye started to change positions and widen more than my left. I know my pain is real, I would give absolutely anything to feel healthy for once. My joints swell and my hands freeze up, I want to be healthy for my daughter.  I've gone to the ER around 5 times in the past three years because of severe migraines, my knees buckling and collapsing, and fainting and hitting my head. Never receiving any real information on what could possibly be making me deteriorate. I was tossed around doctors for about a year before they finally concluded with Graves'. I knew before they told me. There was limited information I found on Graves' by myself but it was the only thing that made somewhat sense. I was given the medication control my thyroid and told my levels were 6x higher than they should be. I will be uncomfortable until they can control my thyroid and only then I will be eligible for the surgery to fix my eye. I cannot have my thyroid removed until my eye is fixed. My doctor said this may take well over a year, due to it being more complicated to lower very high thyroid levels. I have awful flare ups once or twice a month and every time it happens my body feels worse. I know I am so young but I have never lived without pain and I hoped to get healthier but every year is downhill. Even with being diagnosed I'm struggling extremely hard and I need to keep going but I feel my body will soon give out from beneath me, despite all I do to try to save my health. 

 

I feel no one understands the intensity of my pain, I constantly minimize it to try to get through it. Its the worst pain I could imagine and wouldn't wish it upon anyone. I sometimes wonder if its more than Graves' hurting me. I'm still so lost on what to do when I'm alone on the floor, sick, hurting, disabled and unable to care for myself in anyway. I don't want to damn the ones who love me into being my caretakers. I'm having a lot of trouble believing in remission... Everyday is harder, flares come closer together, and the pain intensifies.. I don't know how long I'll be able to be strong.




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#2 Blaze

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Posted 29 October 2017 - 04:04 PM

I am so sorry - how do I say pity you without sounding like a jerk? All I can say is - I understand! I don't have any answers for you as in a lot of ways I'm in as bad a shape as you are. I have been told about my graves disease so very recently and it only took them 4 years to find out what I had. Why is it so hard to find? Why don't doctors know more about this disease that when we go to them with one symptom after another it doesn't dawn on them what they're dealing with? Why does it take so long for someone to say "yeah, you've got graves disease and boy are you in for problems until we get you organized".

 

'Losing strength' it's a great name for your article, and once again I can only say - I understand! I just found this site yesterday Oct 28th and I came here crying, upset, panicking looking for someone to talk to - someone who may have some answers - someone who knew what I was going through - and cared! 

 

I'm a 64 yr old woman, not married, no children, and no friends! How can you keep friends when you can't even get out of bed long enough to take care of yourself without going out and having a conversation with someone else. See I also deal with back pain along with the graves disease, put the two together and the pain is out of this world - want to talk about losing strength! You have your daughter, I had a dog - who's gone now - keeping up that strength just got that much harder at times...



#3 Umi

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Posted 08 November 2017 - 03:10 PM

I am so sorry - how do I say pity you without sounding like a jerk? All I can say is - I understand! I don't have any answers for you as in a lot of ways I'm in as bad a shape as you are. I have been told about my graves disease so very recently and it only took them 4 years to find out what I had. Why is it so hard to find? Why don't doctors know more about this disease that when we go to them with one symptom after another it doesn't dawn on them what they're dealing with? Why does it take so long for someone to say "yeah, you've got graves disease and boy are you in for problems until we get you organized".

 

'Losing strength' it's a great name for your article, and once again I can only say - I understand! I just found this site yesterday Oct 28th and I came here crying, upset, panicking looking for someone to talk to - someone who may have some answers - someone who knew what I was going through - and cared! 

 

I'm a 64 yr old woman, not married, no children, and no friends! How can you keep friends when you can't even get out of bed long enough to take care of yourself without going out and having a conversation with someone else. See I also deal with back pain along with the graves disease, put the two together and the pain is out of this world - want to talk about losing strength! You have your daughter, I had a dog - who's gone now - keeping up that strength just got that much harder at times...

 

 

I am very grateful to have found this community also. Since my health has gotten much worse I feel alone very often, and feel unable to call for help when I truly need it. Reading these forums helps me stop feeling so emotional, like my disease is not just made-up. I just wish my doctor offered more of a solution for me beyond the anti-thyroid medication. Not that I would like more medication, but I feel I am getting to a point of not being able to function on a daily basis. I feel weak, powerless, and defeated. I hope things get better for you Blaze and thank you. 



#4 Blaze

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Posted 10 November 2017 - 11:20 AM

I'm so sorry it's taken me 2 days to get back to you - I've been dealing with my own debilitating problems and needed to get away from the computer for awhile. Thank goodness things are getting better quickly now - a change in dosage did it! Do you see though just how fast things can change for you - so don't give up hope, when things start to get better they get better fast!

 

To be honest with you - not all symptoms are gone but I don't feel like I'm losing my mind and going crazy - I can type with without spending 2 hours on it making corrections - I don't yell and scream at my family for no reason [ which is making them a lot happier ] and I'm not sitting here crying for no reason that I can think of!

 

As far as your Doctor [ offered more of a solution for me beyond the anti-thyroid medication ] the first thing he has to do is get your hormones down to a livable level! Once he feels like you're on the right track, he may then open up about other things you can do - he may not - it depends on the kind of doctor he is! Right now I'm still 'storming' so my hormones aren't yet in the right place [even though I do feel better]  That may be why he's still not 'talking' to me - I really don't know I'm too new myself to know what to think! At least I understand a little more & with a clear head that isn't so emotional, I'm not just blaming him and saying that he's an idiot! I'm willing to give him a chance to get it right before I replace him!

 

You're in a period of change and it's going to take time for you to 'level out' - now with me it didn't take that long before I started feeling the difference - have you called the office and have them tell the Doctor that you're still having such bad symptoms and how they're affecting you? He may want to do another panel of tests or he may tell you to just hang in there but I would let him know what's going on! There are other ways to help yourself and I'm hoping you have another post up - because by now someone in the know usually has posted some of them. I'm not very helpful with that stuff yet - I'm sorry!

 

I wanted to answer this post because you directed your last note to me and I didn't want you to think I didn't care enough to answer - I've been dealing with a kind of confusion lately so I don't remember if there's is another listing from you or not - I may have even put an answer on it and to tell the truth I don't remember but I'll say to you the same thing I've been telling my family to the point they're tired of hearing it - "It's the disease, and I'm sorry!"

 

You're going to have to be a little more pro-active - if you're having problems don't just sit there and take it - the Doctor can't help if you don't tell him what you're going through. Although you're welcome anytime to post what's going on with you - we care, we understand, on hearts go out to you, but we can't change your meds! Mmtzcass may even be able to tell you what's wrong with you from your T counts and that might make you feel better to know - but it takes a Doctor to change things so keep him in the loop! PUT IN A CALL, NOW!

 

I look to seeing your next post - the one that says you're feeling so much better - Please let us know!

Blaze ♣







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