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pain! migranes! fatigue! and told im to young to feel this way!!
19 Replies
tia - August 15

Hi I'm well newly registered to the site but have been reading n quite often looking to the forums fr inspiration to keep well 'smilling n waving'
I'm 23years old and constantly suffer with pain especially in my arms n migranes,most days I have to talk myself out of bed n it just gets me so down
I don't know what to do anymore.the way I feel on bad days effects me going to work and that just makes me more miserable!
No one really understands what I'm going through n I honestly don't expect some1 tht has not experienced it to fathom exactly what
We as fms sufferes go through on a daily basis.I have been told to maybe consider leaving work but I enjoy my work and now I dont know what to do.
More thn anything I need somewhere to vent n no1 will roll their eyes n think there she goes again..having been diagnosed at the age of 17 I feel it is deteriorating over time any1 else feel that way?
I just sometimes realy feel as if im going insane!!

 

Noca - August 16

I'm only 24 and have been in pain for about 4 years now so I know how it feels. Are you seeing a pain clinic at all? I see my pain doctor again in September to optimize my meds.

oh and Welcome to the board!

 

tia - August 16

no i actually have not heard of any around where i live and well not many doctors that i have been to believe fms exist my gp does and the rheumatologist that had diagnosed me but thats about it..also ryt now i feel so useless i got my monthlys and am in excruciating pain supposed to be getting up and ready to go to work and i cant.my legs feel numb,the worst part my parents whom i live with just dont seem to understand they keep telling me think positive get up and get going.i am in tears right now bcoz i feel like im letting them down and i feel they do not understand how difficult it is or the struggle i go through daily to do the simplest of tasks! I am really considering leaving work but if i do am i not letting the fms win?

 

kvc33 - August 16

Hi and welcome. I started having symptoms at the age of 11 and no one understood me. I didn't even figure out that I was ill until the age of 29. One of the dumbest beliefs that people have is that a young person can't be ill. Age has nothing to do with wellness, that's why there are children's hospitals! Forcing yourself to do more than you can will make your FM worse. Perhaps you could find a part-time job or quit work and volunteer instead. I know that people expect a lot from young people and it isn't fair. I attack my symptoms one by one. I too get migraines and take Zomig for them. I take mefenamic acid for severe menstrual cramps. Do what you can to get each symptom under control. What country are you living in? I could give you may phone number if you want to chat sometime. Let me know.
Kim

 

tia - August 16

Hi kim n thanks i will be inquiring about those meds.i am in johannesburg,southafrica.i want to leave work bt im to used to being financially independent i dont know what to do and yes i do push myself.

 

Fantod - August 16

Tia - 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. As you have already discovered, there are still plenty of doctors that either don't believe FMS exists, don't want to be bothered treating it or think you are mental.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

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 recognized by the National Arthritis Foundation, the World Health Organization and the Centers for Disease Control. Over the counter 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.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation web site 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.

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. Lyrica is one them. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata 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 (also known as Milnacipran - your doctor should recognise this name) )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 a lot of tinkering to find the right dosage 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 rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

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 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 day’s 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.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. f you require a sweetener, use something made from the nontoxic Stevia plant. You should be able to find Stevia in a health food store or order it online. 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 manageable increments. Get plenty of rest, watch your diet and eat high protein 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.

Not all doctors/rheumatologists are created equal. Obviously, your current doctor is not addressing your needs. You need a second opinion. Be sure to take a copy of your medical record and current tests with you to save time and money.

And finally, you are not alone. This is a great site for support, information, to ask questions and just vent. I hope that my comments are helpful to you in some way. Take care and God Bless.

 

Stacey373 - August 16

Hi Tia - Welcome to the group! I'm glad you decided to post on here. This illness has to got to be one of the most frustrating and mis-understood illnesses out there. I know what it's like for your family and friends (and doctors) to not believe that you are really having these problems. I know what it's like for them to look at you and you know dang well they are thinking that you are lazy. They think if you just get up and "do something" you will feel better. They don't understand that "doing something" will actually make you feel worse.

"Pushing" yourself is one of the worse things you could do to your body. You are only aggravating all the pain and problems by doing this. The way I handle doing things is I pick a couple of activities that I know I can get through for the day. Like today - I have to go grocery shopping this morning and so for the rest of the day I will just do little things around the house and take it easy. Grocery shopping is a pretty big ordeal because I live an hour from the store...so it turns into at least a 4 hour trip by the time I'm done. So I realize I can't do EVERY thing and I won't push myself to come home after wards and clean the entire house or something like that.

Basically what I'm trying to say is that you need to "limit" your activities and not try to do everything in one day or all at once. obviously your job is very important to you...maybe you can put all your energy into that and then take it easy when you get off work. And if it's still too much for you to be doing....then ask if you can drop your hours down. This illness is all about "trial and error" and you need to figure out what you want to do and then figure out if you can and how much you can do. If it's too much, you drop it down a little at a time until you can handle it.

If your parents don't understand what you're going through with this illness...print off the information on here and have them read it. Research the "Associated Conditions" and see if any of those explain some of your symptoms too.

The headaches and migraines are the worse! I honestly think I can deal with all my other pains and problems...but I can NOT handle my head hurting. Stress is your #1 enemy if you are constantly dealing with headaches (and fibro problems in general). Stress will only make it worse and make you hurt more. I know this is easier said than done...but you need to find things to lower your stress level. And stop feeling guilty about everything you can't do...that will help bring your stress level down too.

I agree with kvc33, you need to attack your symptoms one at a time. There's no "wonder drug" out there that can take care of all the symptoms with Fibro. The most important meds you should be taking (at least in my opinion) are....an anti-depressant, sleeping meds, pain meds, vitamins, and maybe even a muscle relaxer to help with the headaches too. My doctor prescribed Vitamin D to me....and just recently she told me to start taking Magnesium and Vitamin B Complex. (you can buy these over the counter) she told me to take the magnesium for my headaches, so I figure it's worth a try!

I really hope some of this information will help you. I think we all feel very alone at times with Fibro and this forum is a good way to remind yourself that you're not alone and we do understand what you're going through and you do have friends on here that you can talk to. Take Care, Stacey :o)

 

Stacey373 - August 16

btw...sorry if I repeated anything Fantod said. We must have been writing at the same time! Stacey :o)

 

tia - August 16

Thanks fantod and stacey.after a rough day of me against the world i needed that to know im normal im not insane.i have tried giving my parents information to read they stil refuse to accept it and wel like my new post says my doctor has told me to see a psychiatrist as he does not believe fms exists,i do see a c0unciller at work but only last week did i tel him about my fms and he was dumbstruck he c0uld not understand that i seem so healthy yet i fight everyday to put that smile on my face,go out there and do what i have to. my physician another non believer had me in hospital about a month ago for observation and to run tests such as brain scan,e e g,and alot of blood tests.the only result he gave me is im slightly aneamic and hav a calcium deffiecancy so i take supplements.also ive seen a homeopath who says the nerves btwn my back,shoulders and neck are compressed and collapsing.i d0nt know what to believe anymore the rheumatologist that diagnosed me he passed on and no other doctor i have been to believes fms exists.its so frustrating!!

 

axxie - August 17

Hi Tia, and welcome, I know too well, when you say you love your job but just don't have the energy because you are fighting pain. After sometime off, I decided to return to work, against all odds, and even my friends here, told me it was going to be rough ride, and believe me it is. I pace myself and I watch what I eat, and I get my sleep and I keep myself moving. But there are more rought times then anything. I have good days (so few) compare to the bad days.

The tweaking of your medication, will help but it takes time. You are not alone about the constant uphill battle you face every day.

It's a one day at a time. Like everyone said here, you need to pace yourself. Do measure your success by every little thing that you do that goes according to plan.

As for you look healthy and you are young and you should just get up and do it, I wish it was that easy. Take it with stride and try to limit your emotional uphill by choising what you want to be emotional about.

Everyone copes differently and soon you will find your style that works better for you.

Don't despair, sometimes you have to educate the doctors on what Fibromyalgia is and what it's doing to you.

Write down your pain, the duration and what you were doing. Give a list of all medication you are taking, including any vitamins. Stay away from anything that is refined, do drink plenty of water, do drink milk if you can and lastly try to sleep, to give your body the energy to help you heal.

Fibro can go in remission but fibro does not disapear, but with good meds that work for you and little of that, you should at one time find energy.

Good luck to you and please write to us and let us know how you feel, we are there to help you.

 

fibromite.u.k. - August 17

Hi tia, I really do feel for you. I was only diagnosed with fibromyalgia a few years ago and am now in my late 50's. However, I am sure that I had it right back from when I was a child. From the age of about eight I never felt well, always exhausted and always in pain, yet before that I was lively, energetic and never ill, even when everyone in my class was ill with the latest bug going around. I struggled so much at school and the doctors didn't ever believe how ill I felt and told my mother that I was just making it up as I didn't want to go to school and that she should just ignore me. It was terrible. Then as I got older and went out to work, I was always off ill, and like you, people were always saying to me that I couldn't be ill because I was too young to feel like that. I was made to feel a fraud and that I was imagining things. However, I find now that I am much older that I am taken more seriously, but it shouldn't be like that at all. What about if you try to get you parents to read some of the letters on this forum, surely they would believe you if they see how many people are ill with the same symptoms as you have. At least nowadays, this illness has a name which it didn't have when I was your age. I felt so relieved to have a name for something I feel I have had for so long. Best of luck to you. Read all you can on the subject and take along writen pieces to your doctors. One day, everyone will know about this awful illness and take it with the seriousness it deserves. All my blessings to you and gentle hugs.

 

cramersmom - August 18

Don't lose hope. I have had fibro for nineteen years-triggered by my sons premature birth. Amitryptline works for me. For years I was on 25mg and have slowly gotten down to 10 mg. Exercise really helps. I work with a trainer and get a massage once a week.I still have good days and bad days but start slowly,don't put preservatives in your body-eat healthy.Find what
works for you, yoga, walking, biking, stretching. The more I lay around the worse I feel. You can tackle this and win.

 

tia - August 23

Hi ladies :) sorry been hectic at w0rk and well my fasting m0nth so havent had any energy to spare...fantod i have good news ive found a doctor close by and the thing is she herself has fibro so wish me luck :)

 

willardfamily7 - August 23

I completely understand your frustration. I am not sure what is wrong with me and my body but Fms seems to have come up more than once.
As of late, I have been going through this problem of talking myself out of bed as well and it hurts so badly both physically and mentally. I have 2 small children that I must care for and they just don't understand that mommy does not have the energy to help them like I use to. It is so depressing. 6 yrs ago I started with carpi tunnel in both hands and then after that I developed cubatle tunnel in both elbows, now I have a bone spur pinching my spinal nerve creating pain and numbness in both arms still. Although these are treatable conditions, the all over pain and weakness has not been treatable. I am scared to talk to my DR about it and I don't know why

 

Fantod - August 23

tia - That is FANTASTIC news! Be sure to let us know how your appointment goes.

 

AnnStouse - August 23

Stacey and Fantod have really given you great info already. Like you, I've felt helpless and hopeless many times. After years of trying so many different things, I've found if I improve my eating, don't stay in bed all day - even though I want to - and also find something to get excited about in life again, it makes a big difference. I actually think that stopping your job might make you feel worse, even though it's hard to go to work. Maybe change to a more interesting, and less stressful job to keep your mind alive and thriving. I also discovered some supplements that finally seemed to complete my regimine - before I started on them, my day to day symptoms were very unpredictable - now I can make plans and keep them and count on getting a good night's sleep. Also, when I overdo it now, I can get up the next day where it used to keep me in bed for a day or 2 afterwards. just google fibromyalgia natural relief and you'll find the package I started on that made the biggest difference for me.

 

x1xsarahx0x - September 9

how did you get them to dignoise you.. no one belives me..

 

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