Last post Sun, May 04 2008 2:11 AM by MaggieRay. 11 replies.
i am a 24 year old female and for the last year i have had servere muscle pain all over my body eg legs hips back neck arms, its like a constant aching the pain so bad at times i find it hard to do simply things such as put my hair up in a bobble because it hurts to hold my arms up in the air i have also noticed a numbness type feeling in my hands and thighs at times i am constantly tired and even when i get a good sleep i still wake up tired, i went to the doctor he said he was certain that it was fibromyalgia but when i pushed to see a specialist to have the dignoses confirmed he changed his mind and toold the specialist that he though it was depression cause i have 4 small children, the specialist pressed on the different pressure points said i was feeling more pain than i should but still refused to diagnose fibromyalgia, the thing is my youngest child is only 6 weeks old and the pain is making it really hard as on really bad days it hurts just to hold her, could anyone please tell me how they got there doctors to listen and diagnose fibromyalgia i would really appreciate any info people can give me
Hi Tawny, I don't know if you're new to this site, but I am, and I just read your post. I'm so sorry that you're going through the pain that you're going through. I've had fibromyalgia for 25 yrs, and bet then they didn't know a whole lot about it. It sounds like you do have fibro, and the fact that the dr. pushed on the pressure point and it hurts is a sign. I know how hard its with 4 small children, cause I had when I only had 2 boys. There is really not blood test that the dr. can run to say definitely have fibro, but the dr. will run tests to rule other things out. Are you on any medication for the fibro? Also depression runs with fibro too. You maybe a lucky one and not have it. I'm on Lyrica, Effexor XR Lodine, and Hydrocodone, and Oxycodone for the pain. Also do you feel comfortable with your dr? That's also very important. I was lucky that my dr. did listen to me. It sounds like you're on the right route. If you don't like your dr and don't feel comfortable with him or her then get rid of him or her, and find another dr. I would suggest that you go to a Rheumatologist they are the ones that basically specialize in Fibro. Please feel free to post me here Twany and let me know how you make out. You want to be able to your children when they are young because it goes so fast. One quick I want to say, is do you have any hobbies that can take you mind off while your children maybe napping. Do them and rest yourself. I like to read and listen to music. Know also that God is with you and always will even if you don't think he is. Take care and hope to hear from you soon. God Bless
Dotti51
Hi sorry for the poor spelling
have you been to a rheumatologist as thats how i was told it was fibromaylgia.sorry that you are suffering so much and i understnd as ive 3 kids too.fibro has reacked my life but im now trying to change it round.ive had it for 4 years now and its got worse over that time but i didnt believe i had it untill 7 months ago when i stopped drinking.my doc is rubbish and didnt help me in anyway with this as it caused me server anxiety.but i hope you get the right help and you are in the right place,ive only been on this sight for 2 days and its helping me already i wish i new about it years ago.many thanks and if you need help just ask .
I don't know which country you live in but i'm from Great Britain and I saw 3 speacialists b4 I was diagnoised correctly you really want a speacialist in Rhematology i hope thats spelt right! my children were 2and 4yrs when i was diagnosed and i suffered just like you.I've found magnesum,zinc and vitamin c supplements helpful when taken daily. Also take a hot bath when you can as it helped me with the pain. And remember only do the things you can manage and try to pace yourself whilst the children are young. I hope this is helpful.
Best wishes matilda
Hey Tawny, my name is Maggie and I also have Fibro and Osteo arthritis. I am so sorry to hear how you are suffering, but you are not alone. I did get the diagnosis and the dr's still won't give me pain medication or anything that helps with the pain. I have a few other alternatives, such as a Fibro Specialist I am seeing in April, but I am suffering unbelievably also. I am just fortunate I don't have small children to care for, that must be so hard.
You have every right, no matter what country you are in, to demand to see another rheumatologist and get another opinion. Please try to be more insistent about this with your dr and don't take no for an answer. You need to be diagnosed properly so you can get the relief you so badly need.
Let us know how it goes for you with your dr. There should be no reason why you can't get another referral. Hang in there, and know that you are not alone. We are all suffering together here.
Gentle Hugs,
Maggie
Hi Tawny! Your posting really caught my attention. My fibro really declared itself after the birth of my second child. At first, I thought I thought I was so stiff because of the new baby. But the stiffness never went away. If I don't get good sleep, my muscles get tighter and tighter. I went to an orthopedic doctor and went through physcial therapy because I tore my patellar tendon (knee) from the tightness. Having babies is traumatic to the body and it doesn't only take a car wreck or accident to kick in the fibro. I would do hot baths. I would also get an antidepressant prescription. These meds work well for the serotonin that fibro folks lack but it could help with any post partum depression that might be lurking around. Once you have that going, assess your pain. If you are breast feeding, you may have limited options however, keep looking for MD's- rheumatologists are the best bet. Don't let the MD's scare you away. You can advocate for yourself. You can also rate the MD online through various websites. You could go to Health Grades.com and find out info on MD's. I have Blue Cross Blue SHield and they actually post the ratings of the MD's on their provider websites. You just really have to shop around. My mantra is that we are not crazy- just sensitive people that need to take good care of themselves. Hang in there. And congratulations on your new baby!
Hi matilda
thanks so much for that info,i was under a rheumatologist for over a year for my back to be corrected and thats how i found out i had fibro.i will defo try them supplements to see if they help.i do pace myself now as i cant do much,as i go to the gym now and dance and yoga so my partner takes over most of the heavy duty house work which helps me a great deal.because im now battleing the drink as i suffer with server anxiety due to the fibro pains.im under alot of specialists (cant spell sorry) to help with my mental health side of having fibro.im on detox this week at home and i hope i can get back on track.ita took me a long time and hell to finaly start to understand what was wrong with me as i thought at one point i was going made due to docs lak of info to me,but know since ive been talking to you wonderfull lot im starting to put the pieces together.hope youre having some good days and you are welcome to talk to me again many thanks and any help is a blessing.
this is my frist time on any sight, I've had fibro for 7 yrs and still don't understand it.
I stopped seeing the Dr. that I was seeing and started with a new Dr. and she has already done more testing
then my last guy, and she says that evetully will effect my only kidney and my bowl. No one ever told me this
before. I'm hopping shes wrong,cause the pain and fatige I hasve everyday is hard enough, I 9 grandkids and it's
hard to love them when you don't want to be touched, thous days you can't get out of bed because the pain is
so bad, and no one beleves you cause they can't see it! I find people call me lazy, or they say I'm just trying to
get out of something, But the big on is I'm a lier! I find I'm often depressed and just want to lay down and give up.
I don't belive there's ever going to be a pain free day ever again, and I know my family will never belive me nor
will they ever learn about it after 7yrs and they've not tryed so far! So I'm on my own through this, My one
dughter is trying to read a book on fibro, hope she'll understand. And I'll finely have someone to talk to.
thou I'd really like to hear from someone elsa who has Fms cause just walking and stetching isn't helping.
It takes all day for me to do 2 loads of laundry, do dishes, and get a shower.bye then I just wsnt to scream
because the pains so bad, there's days when I casn't even walk, let alone get out of bed, but if I don't then
everyones on me because I'm not doing anything, so bent over I slowly walk around and I only do dish that
day,and cook, but most of the day is spent in the chair with heating pad.
Dear bck im so sorry about the pain your in . Iunderstand i feel the same way you do. People dont understand unless they have fibro.I do battle every day,i am so tired of explaining how crappy i feel to people who dont understand or care.that is way we have each other. We dont have to explain why we dont want to get up and open the windows and go for a walk the fresh air will do you some good .give me a break ,when im going through a fibro flaflare I am sick of defending my self. I have decided to tell them to go pound sand (well Im being polite) and dont worry about what i am and im not doing.So take care of your self and if ai you can do is 1 load of laundry then so be it. take care of your self beck remember you have to wake up in your body. hang in there.
This is the first time on this site...............I was sat here feeling sorry for myself. It's raining outside and I hurt! Does the rain make you hurt more? I felt compelled to search the web for something about fibro. When my doctor mentioned it to me in passing one day, I asked her to write it down. She had in fact mentioned it to me some 8 months previously because she had written it on my notes. I took my scrap of paper home and typed the word into Google. I found a site (and at this time was very sceptical of self diagnosis sites and was blissfully unaware of the condition I now was suffering from) the site was comprehensive and told me what I had been looking for..........................I was a fibromyalgia sufferer and probably had been since my childhood. I cried................not because I was depressed...............I cried because it all made sense. It wasn't all in my head, as I had been told over and over again. I found the missing piece of the puzzle and I felt that I could now try to find ways to help myself (and help other people to understand what I was going through).
You may have heard the spoon theory.......I apologise if I've got this a bit wrong but the memory's not what it was. A lady with fibro explained to a friend in a restaurant what it was like to have fibro. She had already gone through the list of symptoms, pain that never goes away, chronic fatigue, no sleep etc but she said that wasn't all. She picked up a handful of spoons. These, she said, represent everything I can do in a day. If I do something, I 'use' a spoon. When I get up, I use a spoon. When make breakfast, I use a spoon. Every small and sometimes, meaningless task could will cost a spoon. On bad days, the number of spoons I have may be only 2 or 3. On a good day, there may be more than 10! Her friend asked her what happened if she ran out of spoons?......................I don't remember the answer. I remember ringing my husband at work and telling him what it was like for me ever day....................and he finally understood. I told my 3 children too. They are 9, 10 and 12 now. They understood.
Some days I just run out of steam...........or spoons.....Some days I think about what is most important to me, washing the dishes or being able to help make a model with my child for their school project. My life is one of compromise. Having said that, I have it better than some and I am thankful that I have been blessed with a loving husband and 3 troublesome kids.................I have to remember this on the bad days................. I wish it would stop raining!
hi maggie,
i been bck to see a different doc who did more blood tests and when they all came bck clear he put me on fluxitine cause he said that was all a specialist would do, going bck in a month and hopefully i will get referal bck to specialist, thanks for your message.
tawny
You're very welcome, Tawny. I finally found a Fibro Specialist that I have to travel some distance to, but it was well worth the trip. He has assured me we will try everything available to us until we find something that works for me. I could have kissed him! LOL Finally, some hope after four long years of suffering. He is starting me on a drug for Parkinson's, but has been used for Fibromayalgia with some good results. I won't know for about a month if I will have any benefit to pain from it, but I'm willing to try anything.
Just hang in there and keep looking for the right dr for you. I didn't think I would ever find one, but now I have, so it can happen.
