niecsey
04-04-2008, 09:56 AM
Hi all, at the end of my tether had a really bad night and morning... felt so ill earlier with back pain headaches etc etc .... my docs got me in for physio the 15th and were to see what lm like after that... my question is how long does it take to get dignosed? I am so fed up of feeling like this,,, l dont get a break now its almost constant and for years it was put down to my thyroid that has gone and lm getting worse and lm sick of hearing give it 6 mths and we will send you to a rheumy etc etc then my own doc saying we will see how you are after physio!!! I know this is NOT going to shift! Hubby rubbed my back last night and today lm paying for it!! Gawd knows what l will be like when ive had physio :(!!! Im starting to dread that now :( I know you lot understand and l know l may not have it... it might be something else who knows? Im just so fed up of missing out on life cos l feel rotten or to sore/tired/ill to do anything! Thanks guys heres hoping you all have a pain free weekend xxx ps. my chest was aching so much from the position l had slept in even reaching for something felt like l had been weight lifting does anyone else get this? l need reassured sorry :(.
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bluelakelady
04-04-2008, 10:59 AM
hi kiddo,
i know it is a tough road to answers. i was fortunate. i was diagnosed and told what i had 6 months after onset. it was a rapid decline and i got a good couple of docs right from the start. even tho i did not want to hear what the rheumy said, he said it and i learned to live it.
by physio do you mean physical therapy? if so it is worth it. it will be hard, very hard at times but you must not give up. it takes time for the body to adjust to being touched and used in healing ways. hubby may not know the techniques needed to massage a fibro body. it takes training.
i have done p.t. for years now. it got me out of a wheelchair, out of my bed and back to living a slower more gentle life that i find most enjoyable. even pain is okay when the mind is in a gentle space of love.
i would rather hurt because i have been proactive instead of hurting for no visable reason. ya know?
peace,
bluelakelady
i know it is a tough road to answers. i was fortunate. i was diagnosed and told what i had 6 months after onset. it was a rapid decline and i got a good couple of docs right from the start. even tho i did not want to hear what the rheumy said, he said it and i learned to live it.
by physio do you mean physical therapy? if so it is worth it. it will be hard, very hard at times but you must not give up. it takes time for the body to adjust to being touched and used in healing ways. hubby may not know the techniques needed to massage a fibro body. it takes training.
i have done p.t. for years now. it got me out of a wheelchair, out of my bed and back to living a slower more gentle life that i find most enjoyable. even pain is okay when the mind is in a gentle space of love.
i would rather hurt because i have been proactive instead of hurting for no visable reason. ya know?
peace,
bluelakelady
niecsey
04-05-2008, 06:59 AM
Thanks Blue x l know what you mean about rather hurting cos you have lived than only hurting cos you hav'nt :)! iI really appreciate the replies and support here x I just wish l had answers and the right treatment it would be a weight of my shoulders tohave a name and understanding for what lm going through. Thanks again enjoy your beautiful Lake xxx
baserockermom
04-08-2008, 06:49 PM
Niecsey, I started getting headaches (migraines, cluster) when I was 21, was 50% disabled with a respiratory thing when I was 31, all kinds of problems after an accident when I was 38 and if I didn't have fibro already and it got worse, then I got fibro after that and it took til this year, age 48, for anyone (2 docs in one month!) to finally legitimize the widespread, traveling pain and entire host of other issues by telling me I had fm, myofascial pain, and carpal tunnel.
I wish for you docs like bll experienced!!! It sounds to me like it would be worth traveling to another area if that's what it took to get a knowledgeable doc. Good lands, from what I read, this collection of symptoms has been studied since 1888. You'd think they'd get it. Take care!
I wish for you docs like bll experienced!!! It sounds to me like it would be worth traveling to another area if that's what it took to get a knowledgeable doc. Good lands, from what I read, this collection of symptoms has been studied since 1888. You'd think they'd get it. Take care!
niecsey
04-09-2008, 09:16 AM
Thanks Base x feeling really poorly again :( l am so fed up!! Im starting to get scared now thinking theres some thing drastically wrong with me and by the time they figure it out its going to be too late! Im trying to keep things in perspective but its hard waking up every morning feeling like youve been hit with a truck or/and so damm grotty you feel sick! The last few days been having horrible pains in the sides of ribs too lve stopped taking the pain killers (co-dydramol)cos they make me feel worse e.g lve a heightened response to noise and everything looks brighter and they just generally make me feel urgh.. so lm back on paracetemol hot water bottle hot bath and my bed! I do function do as much housework as possible etc but l feel useless l feel awful for my family and guilty that l cannot take part or plan anything cos l dont know how lm going to be. I do know they might say l dont have fibro at all l just want closure l need to know why l feel like this... its getting more frequent and longer lasting. Blood tests lve had show nothing.... My physio starts next week and doc said we will see what happens after that... here in the Uk we dont really have the option of picking and choosing and been a pain or you can get chucked off your docs list! Thanks for the reply and thanks to anyone who reads my moan :( xxx take care all xxx
bluelakelady
04-09-2008, 09:43 AM
hi kiddo,
i know that fear. it is useless and pointless. fibro loves to make us feel unsure of our own bodies. fibro is scary in the beginning. in time you will find your balance, understand the bizarre ways fibro manifests, and be at peace with it all.
i am glad you are doing the physio. it feels so good, giggle. actually you may wonder what the heck your doc was thinking at first. later when you are stronger and able to do more you will sing the doctors praises.
as always i am here to listen and care. now take a deep cleansing breath and relax. whatever is going on within already is there. worry will change nothing.
sorry about your health care system. i know enough about it to know i am glad i live where i live and can choose my doctors, bug them like crazy, and go whenever i feel it is necessary.
peace and three hugs,
blue
i know that fear. it is useless and pointless. fibro loves to make us feel unsure of our own bodies. fibro is scary in the beginning. in time you will find your balance, understand the bizarre ways fibro manifests, and be at peace with it all.
i am glad you are doing the physio. it feels so good, giggle. actually you may wonder what the heck your doc was thinking at first. later when you are stronger and able to do more you will sing the doctors praises.
as always i am here to listen and care. now take a deep cleansing breath and relax. whatever is going on within already is there. worry will change nothing.
sorry about your health care system. i know enough about it to know i am glad i live where i live and can choose my doctors, bug them like crazy, and go whenever i feel it is necessary.
peace and three hugs,
blue
baserockermom
04-09-2008, 09:44 AM
Your moan is completely understandable, niecsey. The last physical therapy guy I got walked with a huge limp. He was the facilities director there and he was my hugest inspiration because he was doing it while obviously in pain every time he took a step. Another time I went was right after surgery from the accident. I didn't ever think I'd be in the game again, but these guys were so incredibly encouraging. The first few visits they mainly did heat and massage, and they never started an exercise day without some of that first and without heat last. I've gone times when I gained absolutely nothing, too, but I hope your pt visit is helpful. I say the massage place is the only thing that helps in terms of really understanding that it is hard to brave any new hope or effort without first getting some relief, some good feelings to exchange for the bad. I think that's why I have overeaten so much over the last few years--I want to feel something good. I want at least a moment or two of the day to say, wow, that was nice. I totally relate to not making plans. We have only one set of friends as a couple that we do stuff with--a trip every year--I spend weeks recovering. You are brave to just get up and try again every day niecsay!
niecsey
04-09-2008, 09:56 AM
aWWWW x thanks both of you x you have brought tears to my eyes :( l am so low... how have l come to this? Before l used to be like this occasionally then slyly its gotten to this point its crept up on me ever so slyly and now its got a bloody good hold of me!!! I used to notice these things approx 12/10 days before my period all these symptoms which were there already but not as bad during the other part of the month but l could cope with the rest of the month and now its all month every month GRRRRR!!! :mad: You know maddening thing is all this has been ignored whilst l had the thyroid problem it was all blamed on to my whacky levels so for years lve put up with this blamed the thyroid and put up with it... got the thyroid out and its worse!! Grrr gawd dont it get you mad? LOL! I glad in a sad for you way you guys are here or l would feel like l am going nuts! I know its not in my head!!! This is making me anxious had a little panic attack yesterday when l went out for an hour with my daughter.(just to the shops was abit brighter yesterday) .. l was waiting for the gripping pains to start in my ribs or chest..l dont like the chest sensations at all they scare me on there own!(sits shaking my head and sighs...) ld hate to think lm going to feel like this forever :( l do try to ignore whats happening and get on with things some days l can others l cant cos l feel too sore :( l feel like a right whinge lol l know theres alot worse off.. l feel like lm missing out on life l feel so restricted and trapped and lost. I know you guys understand me :) thanks again will stop here or l will go on and on and on and l will pay for it later for sitting on net too long lol xxx love to you all xxx
bluelakelady
04-09-2008, 10:05 AM
don't ignore it old girl. simply allow that it is an aspect of your day. not the whole of your day, only an aspect. we all carry pain with us wherever we go. it is the way of this trippy illness.
worry, panic attacks, stress, every negative emotion feed fibro and it grows. one must even be cautious with grand joys and excitement as they cause stress to the body also. it is a delicate balance. like walking a tight rope, without directions or instructions. giggle. hello ground, here i come!! splat!
take the many hands held out to you and let's teach you how to walk that tight rope with grace and style.
peace,
bluelakelady
worry, panic attacks, stress, every negative emotion feed fibro and it grows. one must even be cautious with grand joys and excitement as they cause stress to the body also. it is a delicate balance. like walking a tight rope, without directions or instructions. giggle. hello ground, here i come!! splat!
take the many hands held out to you and let's teach you how to walk that tight rope with grace and style.
peace,
bluelakelady
niecsey
04-09-2008, 10:10 AM
BLL !! YOU are so right!!!! Even good stress things have some effect!!! What a weird disease:confused: Thank you for your lovely words xx
baserockermom
04-09-2008, 10:18 AM
Also, niecsey, remember you have lost something--your health. Read up on the grief process and understand there is no way around that--you will have to grieve the loss and then decide what you can have from here. BLL is the ultimate example of someone who did that grieving and got to the other side of deciding what she could have and going after that. The loss wasn't small either; BLL even went through a stroke and what you are going through has affected so much of you--your ability to be positive and active, to be able to make plans, etc.! The steps of grief will leave you on the other side of this mess. Take care of yourself like you would a friend who lost a parent/spouse; you will be ok on the other side.
niecsey
04-09-2008, 10:24 AM
Thanks Base x l am finding it hard enough to think am l ever going to feel me again!! Ive went down hill since l was 32 l am 42 now 10 years of feeling ill... it was me who diagnosed that l had hyperthyroidism! NOT the doctor! They hate you looking on the net.. lol l think as soon as you mention internet they dismiss what your saying grrr! If l can hold out till l see the phsio next week shes going to be sick of my voice by the time ive finished lol... the doc when l went to see him who arranged for the physio when l went in and he asked how he could help me l started rattling on and he said we dont have long just tell me what is the main thing that is bothering you most!!!! I used to think you in USA had it bad having to pay for your medical care BUT at least from what l can see in most cases they listen and dont rush you! I guess theres a price for everything :) Thanks again l will have to go off now maybe pop back in later my shoulder is aching from using the mouse and l know l will feel it in my chest too :( l think you lot are great l really do x bless ya all and take care my lovely new kind friends xxxx
bluelakelady
04-09-2008, 10:33 AM
nobody rushes me. nobody. i have told more than one doctor to hush up and listen. i make lists of what is going on. i just hand it to them and wait. they are hired help, period.
i once had a doc that said the same thing to me as i gushed out all that was scaring me so. i froze, softly told him where to go, offered him directions, and headed for the door. he stopped me gently with his hand and said, i'm sorry. we talked. about a year later he thanked me for correcting his bedside manner.
so, make a list, worst first. dump it in his lap next time and wait. perhaps it will be easier for you both this way. i know my docs like it.
peace,
blue
i once had a doc that said the same thing to me as i gushed out all that was scaring me so. i froze, softly told him where to go, offered him directions, and headed for the door. he stopped me gently with his hand and said, i'm sorry. we talked. about a year later he thanked me for correcting his bedside manner.
so, make a list, worst first. dump it in his lap next time and wait. perhaps it will be easier for you both this way. i know my docs like it.
peace,
blue
niecsey
04-10-2008, 10:24 AM
Thanks BLL X bad night last night couldnt sleep for pain manily in my ribs lower right and mid chest so lm having a horrible day again :( started the horrible pain killers again so l can get some sleep tonight my chests aching l hate that more than anything for obvious reasons been your chest area inbetween breasts down the inner ribs :( oh what a moan l am lol anyway just wanted to reply thanks for all your help x l did find a fibro checklist and ive printed it out filled it in and l can add more that wasnt on there lol! Have a good day xxx
baserockermom
04-10-2008, 10:58 AM
Have you tried axsain, niecsey? You'd have to get it from a pain spec probably, but it has about 4xs the amount of capacin in it than otc meds. My doc couldn't get to my pain in that area either because it would risk a lung, but the axsain prescrp did the trick. Sorry you had such a lousy night!
bleigh
04-10-2008, 11:56 AM
It took about a year for me to get diagnosed. I was active duty Air Force at the time and trying to get some answers was a nightmare. I was 21, in great physical condition, and loved being active. During my training, I had several things that I believe contributed to my active Fibro. First, I had one of the worst respiratory infections ever. I suffered quietly and made it though basic training a very sick person. Second, in tech school (right after basic training) I had a terrible reaction to the typhoid vaccine....TERRIBLE reaction and I was still sick with respiratory illness (this eventually turned into pleurisy). Third, because I was stronger than most of the women, I had to help the men move large/heavy equipment and hurt my neck. I remember telling my mom that it hurt so badly I could not imagine it would ever get better. Eventually it healed, but after I got to my duty station in Germany and started working (heavy paperwork) I started suffering severe pain in my neck and upper back. I tried to get help and ended up on muscle relaxers that had me sleeping all day and night. Thankfully my co-workers and commander were understanding and just let me nap from time to time at my desk. Anyway, the pain eventually took over my hips. Yes, I was still running 6 miles several times a week and lifting weights. The doctor kept telling me I would feel better when I left the service (which, by the way, I didn't want to leave). Finally, after being sent to a specialist I got diagnosed. A year of pain and suffering. A year of crying and feeling hopeless. A year of feeling like I was losing my mind and creating pain for myself. When the doctor finally told me there was a name for my pain I could finally relax. You may not think getting this diagnosis is something to relax over, but I was so grateful to have a legitimate reason for my pain. I was also grateful to have had other diseases ruled out such as Lupus and MS. Anyway, now I'm 32 with two small children. Over the years I've developed other problems such as not being able to use my hands all the time, lower back pain, foot pain, eye sensitivities, chemical sensitivities, and just about everything else that goes along with fibro. But, I still live a very full life. I'm in some sort of pain most of the time, but I've learned to live with it. I know that I have to eat a low carb diet or I'll suffer the consequences. I know light exercise is my friend (though I'm just getting started again). I refuse to take daily pain meds as long as I'm not suffering more than I can comfortably tolerate. I do take low dose elavil for sleep. I have a few days a month that I need to be resting on the couch, but most of the time I do what everyone else does with the sense to slow down when I need to. Early in this disease you'll suffer with the loss of how you used to be and will go through the emotional distress of your new body. But, it does not have to be an ugly body. You will appreciate your good days and you will appreciate the people who love you on your bad days. You will learn your limitations but can learn lots of new things within those limitation that you may never have taken the time for before. Anyway, you can see from the posts here that you're not alone. Try not to be too afraid of the new things that pop in and out, like the chest pain...Some aches and pains will come and go. That's just part of the disease. Fear only makes it worse. Talk to people who know what you're going through for peace of mind. I hope you are finding some peace.....
baserockermom
04-10-2008, 10:14 PM
Bleigh, join us on "I Dare You" for the exercise--we'll encourage you. Just make one goal, report it, and then tell us how you did. If the bully is getting in your way, we will encourage you.
I had a major respiratory thing too that disabled me 50%; I finally got through that, but fell to all this after the accident and my parents' deaths. You're one of the few I've say that a major respiratory infection began the mess. Interesting.
Niecsey, I don't know what I was doing telling you all about bll; y'all have been on here about as long as each other I am guessing from the posts, so you could tell me stuff. Hope today was a better day for you.
I had a major respiratory thing too that disabled me 50%; I finally got through that, but fell to all this after the accident and my parents' deaths. You're one of the few I've say that a major respiratory infection began the mess. Interesting.
Niecsey, I don't know what I was doing telling you all about bll; y'all have been on here about as long as each other I am guessing from the posts, so you could tell me stuff. Hope today was a better day for you.
bleigh
04-10-2008, 11:36 PM
I'll have to check that out. I'm trying to get myself back into some form of exercise after being without for about 7 years. Strange that it's been that long. Guess having babies and watching them grow up makes time go by so darn fast. Oh, well. I know it's time to start taking better care of me....thanks for the invite.
I totally believe the combination of the respiratory infection, the typhoid vaccine reaction (was totally scary), and hurting my neck was the trigger to my fibromyalgia. I had all three things at the same time and was quite pitiful. I've heard that infections whether bacterial or viral seem to be the trigger for a lot of people. Maybe one day there will be a clearer understanding of what turns this disease ON. Maybe one day they can tell us how to turn it OFF too......that's a nice dream.
I totally believe the combination of the respiratory infection, the typhoid vaccine reaction (was totally scary), and hurting my neck was the trigger to my fibromyalgia. I had all three things at the same time and was quite pitiful. I've heard that infections whether bacterial or viral seem to be the trigger for a lot of people. Maybe one day there will be a clearer understanding of what turns this disease ON. Maybe one day they can tell us how to turn it OFF too......that's a nice dream.
niecsey
04-11-2008, 09:01 AM
Thank you all xxx