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Flower22

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Joined
Dec 17, 2017
Messages
2
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DX FIBRO
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00/0000
Country
US
State
Texas
I am a senior in college and over the past few years I’ve been discovering answers to some medical issues I was having making school and work more challenging and sometimes what I felt was impossible. First off I get migraines, some put me in the emergency room all day others kept me home from class, work, and led me to cancelling plans with friends often. I finally got professional help 6 months ago, only hesitating in the past due to money and a lack of anyone to talk to about it. My neurologist prescribed me medicine to help prevent migraines as I was getting sometimes up to 3 or 4 a week at the most. The medicine helped tremendously to the point I was mad at myself for suffering so long without it.

Around the same time I had the first appointment with the neurologist, I had another problem arise. I had terrible pain and stiffness on the right side of my jaw. I went to my dentist thinking it was a tooth problem, who referred me to a specialist that treats TMJ disorders. That specialist made me a splint, prescribed me antinflammatory meds and a muscle relaxer. I think the muscle relaxer more than anything has helped but I go days feeling like I’m cured and then days of my jaw and muscles on the right side of my face spasming, aching, and hurting to chew or open and close my mouth. It is a current issue as of today. My migraine medicine stopped working after two months so my dose was doubled and has helped since.

Now the third part of my story, the reason I’m joining this community is the symptoms I believe are fibromyalgia. It started months ago, I felt sore all over my body on my skin and muscles as if I had had a hard workout the day before and everything hurt. I remember going to bed that night and was shocked when the blanket brushing on my legs hurt and I became concerned. After about 24 hours I was back to normal. A couple weeks later it happened again. It felt like all my muscles hurt and my skin was sensitive. I remember driving in the car with my friend that day telling her it felt like I was sunburned all over as I leaned forward driving so that my back wouldn’t touch the seat as that was painful. Changing clothes was the worst. I didn’t want to feel the fabric press against my skin making me ache all over. For about two months this reoccurred about every two weeks. After the first two times I began to think something new was happening. I didn’t know if it was side effects from all the medicine I’m on or a separate problem. Either way it was frustrating not knowing.

The third and fourth month this pain became more frequent, happening once a week and then twice. I noticed that some days all my skin was sore but it was much more subtle than the worst days. The fourth and fifth month of experiencing this became worse because other symptoms accompanied the pain. Fatigue hit me so hard I would regularly sleep once a week from 12-19 hours at one time. This would happen when the pain was bad once a week. I would spend two days doing nothing but laying on my couch in soft cloths and rested and slept until my energy came back and the pain went mostly away.

This is stressful to happen as a busy college student who is overwhelmed with studying and work. Now I get tired every 2 or 3 days. If fatigue hits me, just going out to lunch with a friend or to a movie feels like I haven’t slept in a week once I get home. Another symptom was brain fog. This brain fog was happening from the start but I didn’t recognize it as being connected until recently. I would become so mentally exhausted it felt like my thinking slowed down, I couldn’t concentrate, I would become emotionless and not energize enough to socialize with people at work or friends when it was bad. The most embarrassing and scary for me was forgetting what I was saying in the middle of a sentence.

Every time this happened my heart would race as I tried to remember what I was talking about and I was so embarrassed after it happened with a co-worker. I cried at home that day not understanding what was happening. Some of my friends made fun of me joking how bad my memory is. While one close friend was understanding and was used to it, but it still makes me feel dumb and ashamed.

The last symptom to build on all the others was my body temperature going out of whack. Once a week when this problem is at its worst I usually get cold. One time I had the chills for 3 hours. I gently piled blankets on me and it took an hour and a half to warm up again. Other times when the pain was bad it felt like heat radiated out of the skin where I was most sensitive. I got scared but something told me it was probably related to all my other weird symptoms. When my muscles and skin hurt all over it effects me from head to foot but is worst on my arms, thighs, and back and sides of my torso. Even now areas on my scalp are tender and painful to touch and is terrible when I brush my hair. I have to shoo my dog away so he doesn’t touch me and so his tail doesn’t hit my legs. Bumping into furniture was the worst and I learned quickly to slow down and be extra careful.

Now this whole ordeal is becoming expected and is becoming a ‘new normal’ but I don’t want it to be. Every time I googled my symptoms fibromyalgia is all that pops up. I’ve read a dozen articles that have stated how TMJ disorder and fibromyalgia are extremely commonly connected which shocked me the first time I read that because it was that moment I knew what I had. I have messaged my neurologist about these symptoms and have yet to hear from him.

I feel a lack of support and a lack of answers from him that make me almost want to find a new doctor. None of my family know what is going on, they only know I get migraines which is thankfully at the moment the least of my problems. I am just looking for a community of people who don’t think I’m crazy, who are in the same boat, and who may be able to teach me more things about fibromyalgia as I know little.

I hope to talk to people that knows how it feels to be surrounded by people who don’t realize how much of an act you are putting on to look and feel happy, energetic and normal. Who don’t realize you have had to build up the energy to go out and will have to recover from it for days at home. Who don’t see the invisible condition that I fear is starting to control me. I hope to find a way to improve my living because right now I’m scared it will keep me from doing what I want in life. I’m studying to be a teacher, I am 22, and I don’t understand why I have these medical problems or how to manage them. I take some comfort knowing I am not alone.
 
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1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Welcome Flower22, I am glad you found our forum and we all will be happy to help answer your questions. While your symptoms do sound a lot like fibro, as they come and go, or stay long enough to drive you crazy, don't give up on your doctor but do try to keep a journal of your symptoms and what problems they cause you. This will give you a reference point when you see your doctors and have a touch of brain fog.

I have heard mention several members talking about clothing bothering them so I will leave that part to them to explain how they solved that problem. However, I will point out that sometimes this can be a sign of an allergic reaction to medication or food, or even detergent. So rethink anything new you might be using and try different things to see if that could be the answer. If nothing changes then it could be fibro.

My heart goes out to you with your suffering at such a young age. Please read through the different posts and see what we have tried to tell others in terms of managing symptoms. Because whatever name is finally given your illness the main goal you need to consider is management of each symptom so that you can enjoy life even though it is not perfect and keep hope of improvement at the top of your want list.

First off is your bed comfortable? One of the biggest problems with fibro stems from not getting a good nights sleep. If your bed feels hard then look for a thick mattress topper to put on your bed. They come as cotton, feather, or foam. I have a four inch thick foam mattress topper on my bed. It cushions my back and hips and legs so that I am warm and comfy and thus sleep better.

Is your bedroom to hot or too cold? I have found I sleep better if the room is cooler instead of really hot. Also wear socks to bed and lay a additional blanket over your feet and up to your knees to keep that part of you extra warm to prevent cramps and changes if your body temp goes up or down.

That is a start now I will let other members pitch in.

Please write your posts in the order like I edited your big story. Reading long paragraphs can cause dizzy spells or eye strain or headaches for some members. If you make it easier to read more members will read your posts and respond. I look forward to hearing more from you and chatting with you around the forum. :)
 

Flower22

New member
Joined
Dec 17, 2017
Messages
2
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Texas
Thank you for your reply! I will definitely keep a journal. I didn’t know if could be from a food or medication allergy. Although food, detergent, etc. has been the same so I’m not sure that’s the cause. I thought it could be from medication so I told my neurologist and just yesterday he referred me to a rheumatologist so now I have an appointment in a couple weeks but I nervous for it. I have been sleeping deeply well since I’ve started all the medication I’m on. I usually sleep 7-12 hours. When fatigue hits its more like 12-15 hours and I sleep during the day too.

My bed mattress is not that comfortable as it is an on-campus furnished apartment so I did not buy the mattress. In May I will be purchasing my own when I move into my new apartment off campus. I do have a small topper that helps though. I like when the temperature is cooler in my apartment but the thermostat only lets me change it from 72-78 because again the school has it set like that automatically. It’s annoying. I usually open my windows when I need it cooler.

Thank you again!
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Your very welcome. Hope you join in and post more around the forum, that way more members will talk with you. :)
 
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