Old 07-23-2018, 05:35 PM #1 (permalink)
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Default I'm New ... and in pain

Hi. I'm new here and have never done a forum of any kind before, so forgive any ignorance in how this works.

I think I may have had on and off fibro symptoms for possibly the last 10-ish years, but it went unrecognized until last October. I was in my Senior year of college and feeling so out of it. I started hurting all over and became very tired. I thought I had the flu. Went to the doctor but everything was fine. It cleared up, ... but then came back. Again, I thought I had the flu ... but they said I didn't. This happened repeatedly until it stopped clearing up and we realized something else was going on. I had tons (20-something in all, I think) tests done over the course of several months. The only thing that came back not normal was my Vitamin D ... was 11. I started taking it, and it helped some with energy/weariness, but not significantly. In April, I saw a rheumatologist, and he diagnosed me with Fibromyalgia. Since I was moving back home after graduation, he didn't prescribe meds. He just said to get a good doctor when I got back home. Unfortunately, I don't have health insurance any more, and I don't have a job. So, I'm stuck with this diagnosis, feeling miserable most of the time, and not knowing what to do about it. The nurse at the university was great and helped as much as she could, ... but my family just doesn't seem to get it. They don't understand that when I say "I' hurting," that it isn't a minor pain but severe. I don't want to complain ... I don't want pity ... but I do wish they could understand better just how hard this is for me.
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Old 08-01-2018, 08:31 PM #2 (permalink)
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Default Re: I'm New ... and in pain

Hi Sienna,

I'm sorry that you are experiencing those difficulties with your family. I'm certain that can be very difficult. I was also diagnosed while I was in college. However, I've had chronic pain for much longer. I was first diagnosed with a chronic pain illness in 2010. What seems to be the biggest challenge you face with your family? Is it a lack of understanding?

I'd love to better understand what you're experiencing. Perhaps I can help having gone through it myself.
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Old 08-02-2018, 09:33 AM #3 (permalink)
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Default Re: I'm New ... and in pain

The biggest issue with my family is, indeed, a lack of understanding for invisible illness. They see me lounging around the house, and I know that it looks like I'm fine and just lazy. But what they don't get is that the more I do, the more I hurt. But I don't want to lay in bed all day either if I can help it. So I move around when I can .... read a book on the couch, work on the computer at the table, get some lunch, take a nap, help mom fix supper, etc. I know I look perfectly normal to them. It's a difficult balance of not wanting to show pain or complain and wanting to be up as much as possible but also trying to keep the pain and symptoms as mild as possible. They don't get that.
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Old 08-02-2018, 06:19 PM #4 (permalink)
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Default Re: I'm New ... and in pain

Hmm, I think I understand what you're talking about. So far since having fibromyalgia, I've seen people react in two main ways. One group of people tend to do what I call "poor baby" (they're the pillow fluffers/enablers of the world), and the other show a general lack of understanding, sometimes they even react harshly towards the pain. I think it's really great that even though you're dealing with a lack of understanding from your family, it still sounds like you are gracious towards them. Is your family very educated on fibromyalgia? Sometimes I've found it helpful to educate people on the illness to provide a little bit better of an understanding.
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Old 08-02-2018, 11:55 PM #5 (permalink)
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Default Re: I'm New ... and in pain

No, they aren't really educated on it. Because I dealt with all the testings and eventual diagnosis at school (in another state), it wasn't my family that went through it with me -- it was largely the university nurse, my teachers, and my dorm leader. So, I came home with this diagnosis that I'd been learning about for about a month (diagnosed in early April; graduated in mid May), and they really hadn't looked into it when I told them about it.

Sometimes I do want to try to talk to them about it ... show them an article that I think helps people to understand it better, ... I guess my biggest worry with trying that though is the potential of them saying, "We don't believe it's this bad for you" (which I had experienced with a few girls in my dorm, and it was very hurtful). I'm afraid of not being believed again. It's easier to try to hide it and push through it, ... but it's also very lonely.
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Old 08-04-2018, 09:14 PM #6 (permalink)
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Default Re: I'm New ... and in pain

Wow, that must have been so difficult going through those things without family. I am sorry to hear those things happened to you. Ya know, I was priveledged to have been able to take a few courses on fibromyalgia and symptom management. In one of the courses, they had a special section all on relationships. Obviously, they knew the struggle we experience at times with others. In the course they discussed how to approach this kind of subject with family members. I think I still have the PowerPoint hand out we were given. Give me a few days to look around the house, and Iíll see if I can find it. Or maybe, I could reach out to the doctors and receive a second copy. I suppose any help is better than no help in a situation like that, right? Iíll see what I can do. I definitely feel for ya. I wouldnít want anyone to feel isolated from there own family. Iíll be on the hunt!
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Old 08-05-2018, 06:43 PM #7 (permalink)
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Default Re: I'm New ... and in pain

If you can't find it, it's okay, but if you can, that would be great. I always feel at a loss as to how to talk about this with my family.
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Old 08-08-2018, 03:52 AM #8 (permalink)
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Default Re: I'm New ... and in pain

Hi All,

I am not quite sure if I have fibro or not but the pains I go through are crazy. I have not seen a doctor about the pains yet.

Firstly, I have been diagnosed with GERDs and have a Hiatus Hernia - which my doctor says is no point operating on as it will keep recurring and the best this is to control my diet.

I also to get extremely stressed when overwhelmed with work or issues.

My doctor has prescribed some antidepressants which I have simply refused to take - knowing the consequences.

From the tender points of where the pain is normally situated for fibro, I do get the pains in the below areas, which started out a few months ago.

1) behind the ears at the base of the skull and feel the strain in my neck
2) on the trapezius muscles half-way between the spine and the shoulders
3) on the shoulder-blades
4) in the front just above the collarbone
5) about 2 inches below the collarbone on both sides of the breastbone
6) on the forearms along the line of the thumbs just below the crease of the elbows
7) on the insides of the knees.

More recently, I have been experiencing the pain along my left arm, in my armpit and it radiates to my breast. I am very worried about this. My job is a desk job and I am constantly using a computer. The pain in my left elbow is terrible when it starts and radiates all the way to the fingers on my left hand. I feel like my hand then has not strength.

I don't know what to do about this.....
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Old 08-08-2018, 03:53 AM #9 (permalink)
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Default Re: I'm New ... and in pain

Hi All,

I am not quite sure if I have fibro or not but the pains I go through are crazy. I have not seen a doctor about the pains yet.

Firstly, I have been diagnosed with GERDs and have a Hiatus Hernia - which my doctor says is no point operating on as it will keep recurring and the best this is to control my diet.

I also to get extremely stressed when overwhelmed with work or issues.

My doctor has prescribed some antidepressants which I have simply refused to take - knowing the consequences.

From the tender points of where the pain is normally situated for fibro, I do get the pains in the below areas, which started out a few months ago.

1) behind the ears at the base of the skull and feel the strain in my neck
2) on the trapezius muscles half-way between the spine and the shoulders
3) on the shoulder-blades
4) in the front just above the collarbone
5) about 2 inches below the collarbone on both sides of the breastbone
6) on the forearms along the line of the thumbs just below the crease of the elbows
7) on the insides of the knees.

More recently, I have been experiencing the pain along my left arm, in my armpit and it radiates to my breast. I am very worried about this. My job is a desk job and I am constantly using a computer. The pain in my left elbow is terrible when it starts and radiates all the way to the fingers on my left hand. I feel like my hand then has not strength.

I don't know what to do about this.....
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Old 08-19-2018, 10:50 PM #10 (permalink)
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Default Re: I'm New ... and in pain

If you are in problem then you must contact the professional doctor related to your problem because he is the only one who can provide the proper guidance. Make a good decision and share your problem so you can get the right solution.
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Old 08-20-2018, 07:23 AM #11 (permalink)
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Default Re: I'm New ... and in pain

Quote:
Originally Posted by Sienna View Post
Hi. I'm new here and have never done a forum of any kind before, so forgive any ignorance in how this works.

I think I may have had on and off fibro symptoms for possibly the last 10-ish years, but it went unrecognized until last October. I was in my Senior year of college and feeling so out of it. I started hurting all over and became very tired. I thought I had the flu. Went to the doctor but everything was fine. It cleared up, ... but then came back. Again, I thought I had the flu ... but they said I didn't. This happened repeatedly until it stopped clearing up and we realized something else was going on. I had tons (20-something in all, I think) tests done over the course of several months. The only thing that came back not normal was my Vitamin D ... was 11. I started taking it, and it helped some with energy/weariness, but not significantly. In April, I saw a rheumatologist, and he diagnosed me with Fibromyalgia. Since I was moving back home after graduation, he didn't prescribe meds. He just said to get a good doctor when I got back home. Unfortunately, I don't have health insurance any more, and I don't have a job. So, I'm stuck with this diagnosis, feeling miserable most of the time, and not knowing what to do about it. The nurse at the university was great and helped as much as she could, ... but my family just doesn't seem to get it. They don't understand that when I say "I' hurting," that it isn't a minor pain but severe. I don't want to complain ... I don't want pity ... but I do wish they could understand better just how hard this is for me.
Hi Sienna,

I have also been advised by my doctor to start taking Vitamin D supplements.

Did they help you?
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