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23 years old and recently diagnosed with fibro
7 Replies
lilburb123 - April 23

For the last year i have been feeling nothing but extreme frustration. I have been called crazy, i got laid off my job, i was told im out of shape and need to excersise more, that i dont eat healthy enough I am at my wits end because none of that is true. I am a very healthy active person..well atleast i was up until last march, now i am lucky if i can go a day without having a nap because im so exhausted. My doctor stopped helping me because it got to the point where i was going to see her once a week because something new would happen..either my face would go numb...or i couldnt breath going up a set of stairs. She finally refered me to a rheumatologist and after waiting for 4 months i was diagnosed..i have 16 tender points. i have to see i am somewhat releived, especially since there are other people who know how i feel. Its just so hard that i cant do anything that i use to...everywhere hurts..my parents are telling me everyday to go back to work and to suck it up. I can cry at the drop of a hat...and my mood swings are out of control. It is starting to cause problems with my boyfriend and i we have been together for 5 years and never argue but now i just snap at anything. Is this normal to have these type of mood swings? to feel overwhelmed? to be this emotional? i dont know what to do, im not on any medication the only thing that i take is tylenol and that does not help. It feels good to vent because for the last year i have just been bottling everything up because nobody understands. I would give anything to feel like my happy self again!

 

Fantod - April 24

Hello lilburb123 and welcome to the forum!

I'm going to give you a crash course on Fibromyalgia (FMS)so that you have a better understanding of what is happening to your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol long term.

Take some time to read through all of the information contained in the blue boxes on the lefthand side of this page. There is excellent concise information on FMS and the "perks" that can be associated with it. You should also read through the posts to learn about what other people experience and how they deal with it.


If you don't want to share this site with your boyfriend, family and friends to get them on board, there are a couple of other options. Go to the National Arthitis Foundation and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses. I would like to gently suggest that you consider seeing a counselor that treats people with chronic illness to get some additional support. Many of us, myself included, see someone for additional help in dealing with FMS. call your local hospital physician referral service and ask them to make a recommendation.

A rheumotologist is best suited to help you manage your symptoms. I'm not sure why you are not taking any prescribed medication but you certainly need to be on something. FMS places a huge amount of stress on the body systemwide. As I mentioned earlier, OTC medication does NOT work for the type of pain caused by FMS. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. The second option is Cymbalata which is an antidepressant which addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and alot of tinkering to find the right doseage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumotologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

In the event you have been seen by one of the many rheumotologists who diagnose but still refuse to treat FMS as anything other than a figment of our collective imaginations do this: go online to the National Fibromyalgia Association website and register. Then you will be able to see a list of fibro-friendly doctors in your area.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive (me) without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

In terms of diet, if you use anything containing an artifical sweetner, get rid of it. That also includes Splenda. If you require a sweetner, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more managable increments. Get plenty of rest, watch your diet and eat high protiein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing. I think that once you get a medication regimen sorted out, things will start to settle down. It is normal to have mood swings, to feel overwhelmed and and emotional when trying to handle the stress of daily living and FMS too. This is why I am strongly suggesting a prescribed medication regimen and counseling. In the interim, don't be too hard on yourself. You are not alone. Let us know how we can help. Take care and God Bless.

 

ptalana - April 24

Hi lilburb, welcome to our fibro family. We can all relate to how you are feeling both physically and emotionally. And as Fantod has mentioned there are prescibed medications that can help in dealing with your symptoms. When you see the rheumy he/she will be able to help with this. What I can suggest is that you start keeping a diary of your pain and symptoms to take with you to your appointment.
There is not much else I can add to what Fantod has already mentioned. With fibro knowledge is imperative to learning to live and cope with the many symptoms. A positive attitude will also carry you through the rough times. And please remember we are all here for you when you need us.
All the best, Patty :)

 

Noca - April 24

Welcome to the forum! I too am 23 and just got diagnosed with fibromyalgia. I am currently on meds that help take the edge off the pain but still battling the fatigue. Hope to see you around.

 

powderblue - April 24

Hi Lilburb123

I got diagnosed with Fibromyalgia at 24. Fortunately I got diagnosed within a couple of months of symptoms. I couldn't work for five months and then returned to part-time work (one day a week). I slept a lot in the first few months, ten hours at night and then a two hour nap in the afternoons. Like the Fantod said pacing is really important. Only you will be able to figure out how to pace yourself. Often a half hour task may be easier if you do it in ten minute bursts and having breaks in between. I wasn't prescribed anything- but it probaby wasn't common to prescribe back then in my country. I tried hydrotherapy, learnt meditation (twice a day), stress-reduction, and gradually increased my activity- not sure which was more effective but I definitely got better. I'm sure you will feel sad and grieve for your old self. I was a very active person and most of my hobbies were quite physical like running. So I took up hobbies that I knew I could do or manage with my fibromyalgia and gradually increased the amount I walked each day. I was fortunate in that I got a lot better and pretty much went into remission for 9 years. If I hadn't rested, had had commitments like children etc I may not have got better. Only after pushing myself too hard physically, working shiftwork (probably not good for restorative sleep) and a bit of stress have I had a flareup in the last couple of years (not as bad though). Don't feel guilty about making your health your priority. It is hard trying to make people understand what you are going through and a lot of people don't often have the patience for illnesses that are chronic. Not having support and having to deal with this illness can cause more stress which can often worsen your symptoms. If you find a good specialist or doctor would it help to consider taking a family member or your boyfriend along with you so they might have a better understanding of your condition. There may be some support groups that could help in your area too. Take care

 

bwelladjusted - April 25

Hi Lilburg123,
I really feel for you. There is no good age to get fibro, and every age presents its own set of challenges, but it can be really hard to have it so young.I'm 20, and I was diagnosed about a year ago. It is sooo frustrating, because when you're older people seem to expect you to be less energetic and have more pains, but when you're young everyone seems to think all you need is some willpower and something to do. I have had many such conversations with doctors, and even with really well meaning people at church and work. They're trying to be nice, but they all have suggestions for you about exercising or working through the pain. One of the hardest things about having fibro at our age is all the things you haven't been able to do yet. For me it changed everything. From whether or not I can get through college, to reconsidering whether I can still have the career I had planned on, to wondering how on earth I would be a good wife or mother. It can be disconcerting to find yourself just starting life and already facing so many challenges and limitations. My faith and my family have really been what got me through this last year. My family has been very supportive, and my mom refuses to give up. She truly believes there is an answer, and she keeps looking for a cure. For my faith, however, this illness may have the been the best thing to happen to me. It has really made me reevaluate my life, caused me to draw closer to the Lord, and learn to trust Him in a whole new way. Whatever plans of mine may be gone, His plans for me are so much better. And He has led me to the place where I can honestly say that no matter what else I do or don't have in life, He is enough for me. I will be praying for you, and everyone here is great support. After the first year I really think it gets easier. Just hang in there!

 

Myriam - April 26

Hi, my story is about the same as yours. I'm 27 and my husband and I have been together for 8 years. I have been feeling like this for 7. I had a traumatic event in my life which is what triggered it. My husband is having a hard time to understand and I loose my temper quite often as well. My husband does not believe in sickness, if you dont have an arm cut off, you can't be in pain... It was hard to make him understand that some days, I CAN NOT go to work, even if I want to. I explained to my boss what it is I have. I dont know how your boyfrined is, but if he loves you, he will come to understand that you are limited sometimes. I believe to keep on working, make sure I dont go stircrazy. However, i was on sick leave for 2 months at one point. i am new at this too, I understand you. For my relationship, I talked and discussed it a lot with my husband. It was the best thing I could do. I also printed some info off the net and I will be bringing him to my next doctor's appoitment.

 

Ena - May 9

i need help i am from egypt , and i cant find specialized doctor for FMS???
i need someone told me if i an be mama or not and what about my kids and me ? i ?need someone told me after 20 years what will i have extra, my body and my muscles ?what will look like???
i need help? ?
i am feeling so bad

 

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