Fibromyalgia Support Group

Here is a little about me. Hi my name is Ashley. I am 20. I was diagnosed with Crohn’s disease last year January 2009 and now I was diagnosed with fibromyalgia February 12 2010. I live with my mom (my parents are split up about 5 - 6 years now, my dad is an alcoholic and I feel like he chooses the drink over me, so I don’t try to talk to him any more…. He has messed up every chance I gave him, and sadly I gave him a lot of chances). I have two cats. Daizey is the older one with the bright face and Maizey is the smaller one with the darker face (If you look at my profile pictures you will see pics of them). When I was diagnosed with Crohn’s it was so bad that I had fistulas and the doctors knew it was bad that they were going to put tubs in my tummy to drain the fistulas. But when they went in, it was really really bad because they where so big that they could have pop at anytime and kill me. So after I found that out, I felt closer to God and it just was not my time to leave the world yet.

So I found this website in September and met a lot of people on the Crohn’s section. I have bonded more with others that I feel like we are really good friends now. I am only 20 and some days I just feel like I am in my 60s. I don’t have a lot of friends any more, since I have been out of school, and some people in my family just don’t understand how bad my Crohn’s is (Some of the doctors I have been seen my case are amazed to see how bad my case is….) My family thinks I can just snap out of being sick all the time…. If only they know half the pain I am in, most of the time, I am hiding it since I don’t want to hear that I should be able to do this and that. And just the normal things I do in front of family members only put me in more pain, just because I don’t want to hear them say I am I should be able to do this and that…..

I am still pretty freak out that now I have fibromyalgia. I don’t know much about it. I still have to do more research (so if anyone has any good websites please sent them to me if you don’t mind) I had a feeling I had it, since one of my really close friends I met on Crohn’s chat on here and we talked for sometime and I learned she had Fibromyalgia. So I told her the problem I was having and she was pretty sure I had it, but she said she was praying that I did not, since it is not a nice thing to have.

So I talk to my Mom about it and we decided to talk to my new family doctor next time I could go see him. He is an internets (he is local and I just found out about him since that was the doctor the SSI told me to go see) So the first time I was there he never seen before, but I was asking him if he could be my new family doctor since I don’t like the one I have, that I was looking for a new one. He kinda pushed me off like saying he had enough patients. So he opened the paper work from the SSI saying I had Crohn’s Disease (my GI is like 2 hours away from home and my Mom’s car is broke, so I don’t see that doctor in a long time, even though I am supposed too, for blood work and things) So the doctor got really nice with me and start to lesson to me that I have not seen my GI in over a half year and I don’t have the abilities to get there) So he started to push on my tummy which may me yell owwww loudly every spot. And he was like you need to be in the hospital, you are in a lot of pain aren’t you. I said yes to him and I told him how I especially hide it from my Mom, since we don’t have the money to be in a hospital that is 2 hours away (where the GI is, since that is where they sent me, when I went to the local hospital when I was first diagnosed with Crohn’s, since there was no one in the local hospital that could handle my case) and I don’t want her to feel bad when she can’t take me to the GI any or any doctor appointments (but she would take me to the hospital if she knew I was in a lot of pain, it is that she would be scared that they would send me to the other hospital though, since her car is broke and we both don’t have a lot of money) Me and my mom are sooo close we are like sisters and I don’t like making her worry or sad if I can help it. So after explain all this to the doctor he said no I will be your family doctor I am an internist and I want you to go to the local hospital, I a doctor you would see in the hospital. I almost fell over since I have been praying to God to find a local doctor, so I can start to at less a little better. I stated to have a pain attach in front of him though when he said I need to be in the hospital that day. He seen I was having an attach and told me that he would let me have one more day at home so I could pack my things to do in the hospital (crafts, puzzle books, pictures of my cats, my cloths, washing things to keep clean) Plus I told him I wanted to be able to eat a good dinner since I knew he would seen me to cat scan (*which I am sure you all now that means no eating for some time and have to drink the dye stuff*) He have me meds for my excitey until I could get into the hospital the next day. I went to the bathroom and I could hear the doctor talking to my mom about how much pain I was in and that how I hide it, because she does not want you to worry about things, and then explain that he was my new doctor and that I was going to the local hospital the next day…..

I don’t like being in the hospital, but I did feel better that I was closer to home (like 15-20 mins away). So of the nurses where really snappy to me when I got there. Like yelling at me that I should have been in the day before and then they told me that I was going to have to have a steroid shot. I told them to give me a bucket, since I always puck insetally after having steroids shot. The snappy nurse was LOL and was like I never herd of that. Another nurses (who was a lot nicer got me a bucket and asked the mean nurse if she wanted her to call my doctor about the shot) I don’t know what was said not to call him. And the mean nurse left the room. So the nice nurse gave me the shot Thank God) she was doing it really slow so I told her thank you. Then I told her I was getting nauseas. Then I pucked. And I told her I was so sorry that I would clean the bucket if she wanted me to. She was all like no no. You are not leaving this bed. She told my Mom to get some wet wash clothes for my head since I was all sweaty after words. The mean nurse came in and was all like was that my girl who just pucked. So yes I believe there are great nurses who are their for their patents and not for a pay check, but I do understand nurses do have bad days, but they should not put it on the patients at all. Any ways I had some great nurses so would talk to me for a couple a minutes and made sure I was ok and if I need anything….

So the one morning my mom came in to see me at the hospital and met with the doctor and he told her that I had abscess that they where not big enough to put tubs in that I was on meds and was being watched to make sure nothing else comes up (like if something changes in my blood or whatever they check).

I was supposed to see the doctor about 2 weeks after getting out of the hospital, but I could not find a ride until about 6 weeks after being in the hospital. He was not to mad when he seen. So I told him all the problems I was having and then he did a test for fibromyalgia and he was like you are right you have it. But we need to get the Crohn’s under control first then we will work on your joint pain from Fibromyalgia.

Thank You I will look at that website!!!!!

Oh Ashley, you are such a pretty young woman and it is terrible you are facing these kinds of problems instead of being able to go out and have fun at your age! It is very sweet of you not to want to worry your Mom but take it from me as the mother of a young person myself that I feel she would much rather know what is going on so she can try to do something to help you than to find out only later when it becomes an emergency. You have a dangerous condition that could be fatal if not cared for properly and if this happened she might blame herself for the rest of her life that you did not come to her and tell her what was going on. I understand you meant it for the best but please be more honest with her about what is happening in the future. Now I have finished with my fussing and will move on.

You have two beautiful kitties there and as you can probably tell by my picture I love kitties too. I also have another one that is a grey and cream tiger tom (well-used to be tom but we fixed that problem in both of them).

If you go up to the top of the page on this site you will find a heading called Articles and you can find a lot of good information there.

Ok on to some links that I like. The first one is a newsletter that I get weekly on new meds, treatments, studies and that like for conditions that I have. It covers a whole lot of different conditions and you check just the ones you are interested in.

http://www.medicalnewstoday.com/newsletters.php? changemydetails=y

This site is the Mayo clinic's fibro(you will see a lot of us call the condition fibro for short instead of writing out fibromyalgia) information site. They are a very knowledgeable and trust worth site.

http://www.mayoclinic.com/health/fibromyalgia/DS00079

Also this is another site I go to from time to time. I have signed up to receive their newsletter. They of course offer a lot more goodies with a paid membership but you can access a lot of information without it more than I can keep up with anyway.

http://www.fmaware.org/site/PageServer

That should be plenty to get you started. I am sure there will be others come along to offer even more places to find information.

I am very glad you found this site. I have have been diagnosed with fibro for more than 10 years and have perused the net a whole lot and this is the very best support group I have found. I think you will love it here and I think it will be very good for you.

Well I guess I am being more open to my Mom with my problems like today I was just picking up things in my room for maybe 15 mins and I had out with my face all red and shaking.... Mom was like you need to stop pushing your self (I told her it drives me crazy I can't do the things I want to)

My Maizey is amazing ~LOL~ Her mom abanded her in a barn (I am guessing she would have only been a day old if even that), I found her next to a kitten that already passed. So I am an animal person so I could not let the alive kitten just lay there and die.... So I took her in (mom was not to happy at the time since we already had one and the landlord did not want cats in the building to beging with but I talked to him and he said ok 1) and ways I would feed her every 4 hours and did the potty thing, I loved it I felt like a mommy.... I talked to people from pet societies and they say that I did a really good job with her since most kitten would have died any ways, even if people try to help them when they are so young, because they are not commited to it, and there is complication like milk getting in the lungs....

Thank you for the websites I will look at them in a bit

Hi

You certinly are not walking an easy road, but it sounds to me like God is smoothing the path. I am glad you found a good Dr. and a kind nurse at the hospital.

God Bless.

Thanks for the websites I have been looking at them today.... I am home alone with my two cats.... My poor Maizey is in heat and she is being so cuddley.... My other cat Daizey has a sore on her neck and I have been putting vaseline on it and she just licks it off (vaseline is ok for cat since it helps with hair balls) so I put anit itch meds on it and put a scarf like thing on so she could not lick it off and give it time to be absorbed) She would not move after I put it on her she was like a statue, even after I took it off.... At less she is not itching it right now....

I am proubley over doing it today, but since my mom is at work.... I wanted to suprise her with the house being more organized.... It is hard for use to be organized since we dont have the money to buy plastic boxes and stuff that helps be organized.... I am doing it slow and not lifting anything to heavy, but who knows how I am going to feel tomorrow

I just hope mom likes my new ideas for the living room, if not she will have to redo it ~LOL~

Hello Ashley and welcome to the family! That was a good idea with the scarf for the cat, and I know what you mean about how they won't move once you put it on them. Isn't that too funny??

Please don't overdo yourself; I learned long ago that it's ok if the house is a little dusty, or a little cluttered, because you never know how much time of feeling okay you will have, and I choose to spend that with my family if I can!

Well I think I will be feeling it tomorrow.... I got alot of papers sorted out, put a bookself in the living room (it was like 3 feet tall so I pushed it not pick it up) I took my snowman collect down from the tv stand, cleaned the computer area, sorted my hobbies out.... I know it does not seem like alot but I have not done that much cleaning in over a year (at less it feels like it)

I am so sorry that you are so young and having to go through this many problems. But I am glad that you are so close to your mom because she will be your strength in dealing with your health issues, so learn to lean on her for help. I was diagnosed with fibro in june and one of the biggest things i learned was to pace myself, I can only work about 3 hours a day and it made a big difference. Everyone is different so you have to find you limit and stick with it even on good days. light exercise daily also helps and finding the right meds to help with the pain. We are here any time you have a question or just need to vent. I will keep you in my prayers.

Post edited by: TressiaN, at: 02/21/2010 07:57 PM