Anyone else as confused as I am? Fibromyalgia

RSS
Email

0 Kudo

Author	Comment
Imprezawrcst	Anyone else as confused as I am? Fibromyalgia		Lead	[-]
Posts: 10 05/23/08 10:07	Tags : None Hi all. May I firstly say, its nice to know Im not alone...... I am a 34yr old MAN living in Drammen. Been off work for about 14 months and finally been "diagnosed" with Fibromyalgia. Thing is, there is so much information out there I just dont know where to start. So many things to try that may help. So much advice. And where in the hell am I supposed to get the money from to try all of these cures and treatements? My wage has been reduced from 19500kr to 9040kr by Nav Trygd... I have 2 kids and 1 about to show himself in 8 weeks and I really cant figure out how to survive. My perfectly good job has been taken away by this illness and now I have to retrain in something else. How? 9040kr during the retraining period just isnt possible. And what about your doctors? Are you all happy with how they have handled your case? Mine started well, sending me to every test available. But when nothing showed up it was like she gave up and this diagnosis still doesnt feel right. I feel that the word/illness Fibromyalgia is short for, "we dont know what is wrong and dont really beleive it so we will call it that and then every doctor knows you arent really in pain. " Oh and the last few visits she has just said that I should just get another job. Its like she doesnt understand the pain I am in.... Its all just so overwhelming..... Last Edited By: Imprezawrcst 05/23/08 10:14. Edited 1 time.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
havheg		#1	[url]	[-]
Posts: 4679 05/23/08 12:09 Moderator Norway	Hello and nice to meet you! I can fully relate to your despair and confusion, as can many others of our members. Fibromyalgia is very often a diagnosis of exclusion... If you read around the board you will find information about the diagnosis. Since you live in Drammen, Norway, I guess you want to talk to our Norwegian members about your experiences with NAV and the doc etc (I also guess this since you posted on our Norwegian side of the board ). Many of our Norwegian members are uncomfortable with the English language, so you may want to post in Norwegian if you want many replies! If you are most comfortable writing in English we have an English speaking part of the board as well. Smalltalk for fun and Coping for health issues. See our main page to find the different forums: http://sunshine35446.yuku.com/ Healthwise I suggest that you talk to you doc about a "rehabiliteringsopphold" at one of the Rehabiliteringsinstitusjoner we have here. Jeløy Kurbad has specialised in helping FM patients: http://ojk.no/index2.htm Your doctor should know about these and she has to apply for you.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Cala57		#2	[url]	[-]
Posts: 1364 05/23/08 13:21 The Flower Norway	Welcome
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Imprezawrcst		#3	[url]	[-]
Posts: 10 05/23/08 13:36	Thanks for the advice. If its ok, ill stick around here though. Want norwegian responses and hopefully reading english isnt that much of a problem. Not seen it on the other norwegian forums at least. He he. I can read alot of norwegian so everyone can just write however they like. And thanks again for the welcome. :D
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Sunshine56		#4	[url]	[-]
Posts: 43124 05/23/08 13:50 Mosken ezOP Board Owner Norway	Hello and welcome! Who gave you the fibromyalgia diagnoses? And what are your symptoms? It is very expensive to live around the Oslo era. Would you consider moving to another part of the country? Also, what kind of doctors have you been seeing? I guess you know about Social Security when the disability money is not enough? Is your wife able to work? What kind of work did you use to have? Many questions, I'm sorry. Mosken
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
jone54		#5	[url]	[-]
Posts: 610 05/23/08 15:45 Donuts Norway	Ønsker deg velkommen hit Er ikke god i Engelsk
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Kamht		#6	[url]	[-]
Posts: 1780 05/23/08 16:10 Norway	and I hope you will get some information from us here. Have you been to a "revmatolog" to get your diagnosis or was it your "fastlege" who gave it to you. I got my diagnose by a doc. who was a revmatolog in Trondheim and that was accepted by NAV at once. Ask your doc. to send you to all the specialist's you can for further examination, that's my advice to you. I'll hope you understand what I'm writing and what I'm meaning, I find it a bit difficult to translate in my head and down to my fingers . I'll hope you will be happy to be here and we will enjoy a male between all us girls. Kristin
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Imprezawrcst		#7	[url]	[-]
Posts: 10 05/23/08 17:14	Hi again and thanks for the welcome. I have been to my fastlege for the whole period. Been sent to mri, x-ray and then to Friskevern kliniken in Asker. They couldnt help me much but together with my doctor gave me the diagnosis. (After the spinal tap) I was then sent to Helse og Arbeid who said I couldnt go back to my current work and should look for another. Yrkerettet attføring is what I am on now. I have pain in both knees, hips and shoulders. Sometimes my back. Most of my joints to be honest. Stabbing pains as well as alot of clicks from the joints. The most annoying part is the numbness though. Very depressing and a constant thing. At nights almost impossible to sleep due to it "tickling" so much. Cold and hot water/air also irritate. Concerning moving, I cant. I have a child from another relationship who lives with his mother in this area so I will not move without him. My wife works, but due to bekkeløsning because of the pregnancy she is also at home and getting nothing but crap from Nav trygd. She is earning about 16000kr which should be enough but due to us getting a loan to clear all of my inkasso problems (while I was working) it means we have alot of debt and now the future looks bad. Ironically by clearing my debts and now me getting sick we could loose everything and be back in an even worse situation. Thanks for the welcome jone54 and dont worry about the english. Norwegian is fine. Trust me my norwegian writting is so bad you would think its chinese. Kamht, your english is excellent. Read above... :p he he.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Allis61		#8	[url]	[-]
Administrator Posts: 7300 05/23/08 17:16 Alice Norway	Hei og velkommen Du skriver at du kan lese norsk rimelig bra, så jeg velger å skrive norsk da. Det er hard når man får økonomiske problemer i tillegg til sykdom. Jeg vet jo ikke hva/om din kone tjener, men som Mosken sier så kan dere være berettiget til hjelp på sosialkontoret hvis det blir for trangt økonomisk. Selv har jeg ikke fibromyalgi, men det er nok viktig at du blir utredet av spesialist. Særlig hvis du føler diagnosen er feil. Som Hege sier vil et opphold på Jeløya kurbad >>> sikkert kunne være til god hjelp for deg. Der har de et fireukers rehabiliteringsprogram for mennesker med fibromyalgi og kroniske muskelsmerter. Du vil måtte betale en egenandel pr døgn ( tror det er kr 120,.), men hvis man ikke klarer det økonomisk kan man søke sosialkontoret om å få egenandelen dekket av dem. Det du opplever som likegyldighet fra fastlegen, kan like gjerne det at denne føler avmakt når alle tester og undersøkelser er gjort uten noe håndfast å ta tak i. Får du noen medikamentell behandling for smertene dine? Hvis fastlegen er helt passiv på alle måter, ville jeg vurdert å finne meg en ny. Men du skal vite at veldig mange fastleger ikke helt hvordan de skal kunne hjelpe mennesker med fibromyalgi, dessverre. Beklager hvis jeg ikke var mye til hjelp, men hvis du leser litt rundt på sidene her - både norske og engelske vil du finne ganske mye informasjon om fibromyalgi og andre emner. Bruk "Tags" boksen på toppen og klikke på det ord du er interessert i å vite mer om, og du skal få opp alle tråder som omhandler dette. Ellers har vi en veldig god søkefunksjon i oppe til høyre. @lice
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
jone54		#9	[url]	[-]
Posts: 610 05/23/08 18:13 Donuts Norway	Heisann Flott at du skjønner hva jeg skriver.Jeg skjønner det meste av det du skriver Og Norsken din er altså ikke "kinesisk" Veldig vansklig situasjon dere tyderlig har kommet i Først og fremst bør du nok få noe for smerter og søvn av legen din Dette er nok ikke vidundermiddler,men kan hjelpe en del Er i allefall godt å få sove litt,det hjelper litt for fibromyalgien min,men nummenheten er nok ikke mye å gjøre med kjenner jeg Jeg ville nok og prøvd å bli henvist til en reamatolog Som Allis sier,det ligger mye innfo rundt omkring her inne
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Sunshine56		#10	[url]	[-]
Posts: 43124 05/23/08 18:21 Mosken ezOP Board Owner Norway	Reading your last information, I don't feel comfortable with your diagnoses. I'm very familiar with the clinic you have been to. It is not a good clinic in my opinion for people having a lot of pain. They don't even have any specialists have they? They are good if you are able to exercise to get better. From what I understand, you have not been to any specialists at all. I think you should ask to be sent to a specialist in Oslo. I have unfortunately not heard a lot of good about doctors in your city. I may be wrong. The clinic that Alice and Hege mention, has average three years waiting lists. Besides, it is for people with a clear cut fibromyalgia diagnoses. Do You remember how and when you first experienced pain? Maybe you need to talk to your bank because it is a bad time for you paying back loans. Last Edited By: Sunshine56 05/23/08 21:39. Edited 1 time.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
BELL		#11	[url]	[-]
Posts: 2453 05/23/08 21:06 Surrehue Norway	Welcome! Hope you can find some answers in here, and also, take a trip in the english side, and look for info. Have a nice evening
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Imprezawrcst		#12	[url]	[-]
Posts: 10 05/24/08 07:00	Sunshine56 wrote: Reading your last information, I don't feel comfortable with your diagnoses. I'm very familiar with the clinic you have been to. It is not a good clinic in my opinion for people having a lot of pain. They don't even have any specialists have they? They are good if you are able to exercise to get better. From what I understand, you have not been to any specialists at all. I think you should ask to be sent to a specialist in Oslo. I have unfortunately not heard a lot of good about doctors in your city. I may be wrong. The clinic that Alice and Hege mention, has average three years waiting lists. Besides, it is for people with a clear cut fibromyalgia diagnoses. Do You remember how and when you first experienced pain? Maybe you need to talk to your bank because it is a bad time for you paying back loans. I was seen by there neurosurgeon and was also seen by one at the hospital when I had the spinal tap. I have been checked for ms, arthritus and several more on the list. What is it that doesnt add up for you as its very frustrating to hear that after so long and so many different tests and opinions that when I finally get a diagnosis you think it is wrong. Concerning my history: Please note I wrote this somewhere else and copy and pasted here so take no noticed of the dates as I posted it on another forum about 9 month ago. Its pretty detailed. 3 months ago: Left leg started to hurt Left shoulder started to hurt Left hip started to hurt Right hip and knee started to hurt 2.5 months ago: Lower back hurting. Especially when sitting for around 10-15 minutes in the same position. Started to get numb below the waist, both sides Right hip and knee doesnt hurt anymore Left leg, hip and sometimes lower back hurting when sitting in same position for 20 mins. 2 months ago: Started to get numb on left hand and up to left shoulder. Feels like tickly, itching on the bone. Numbness on lower region, right side, gone. Night time especially numbess almost unbareable. Driving me nuts HAD X-RAYS ON HIPS AND KNEES TO CHECK FOR ARTHRIS AND MRI ON SPINE TO CHECK FOR OTHER PROBLEM. (CANCER) NO PROBLEMS FOUND. 28.5.07 Aching on left hand side of my body. Pulsing pain. 2.6.07 Feels like being scratched on the bone when wind touches my skin on the left side. Very itchy feeling. 3.6.07 Pain in the knee, hip and lower back takes longer to show now. On average about 25-30 mins. 15.6.07 Feels like above when left hand is in cold and hot water. Itching and irritating. Not on the right side. 19.6.07 Pain in my right hip. Also some tickling numb sensation. A lot of tickling and itching on my left shoulder. Had MRI TO CHECK FOR MS: results nothing shown 23.6.07 Numbness up the left hand side back of my neck. Feels slightly numb on front of face too. 24.6.07 Pain in right shoulder. 25.6.07 Pain in heart area. Maybe heart. Feels like someone is poking really hard with a fork. Pressure on chest. Also feels like someone is poking from the back through to the heart area. 26.06.07 Went to doctor. Had ekg which showed nothing. Also took test for lyme disease. Came home and still have chest pain as well as knife pain in left leg just below knee, left foot and middle of left arm (top) I have checked the internet and several things popped up including Fibromyalgia and Guillain Barre Syndrome (ghee-yan bah-ray) and also worth noting that I had a flu shot before these symptoms ___________________________________________ Little update. Still sick. Been getting slightly better for about 3 months. No pain killers but after physiotherapy I got bad again. For the first time in 3 months I had to take a pain killer. That was really depressing. You think you are getting better but you get worse...... They stopped the physio and this afternoon I went to the head of the place that is trying to figure it out. He was so pissed off that I still hadnt received an appointment for the spinal tap. Said he would do everything in his and his teams power to figure out whats wrong with me and that I should keep my spirits up. Im so tired after 7 months of sickness. 7 months of constant numbness and pain....... But hopefully this new doctor will figure something out. All I need is a diagnosis.... I told him I would love to know what this is but if they cant figure it out then I need someone to tell me they dont know whats wrong but I need to live with it. Then I can get on with my life. Im just so tired..... Has spinal tap and nothing showed up. Given diagnosis of fibromyalgia. I feel that the doctor has a list of possible causes and when all were ticked as negative she was just left with this one.... Pain and numbness ended up on both sides of my body. All joints seem to click now. Extremely painful on the left hand side hip and shoulder. etc etc __________________________________________________________ I recently took Rhus toxicodendron after my wife was informed it could help me. Took 3 times and then it takes about 7 days to work. After 8 days all of my pain is so much worse. Cant leave the house now. I dont know if its connected or if I am just getting worse. I certainly feel like Dr Strømme has given up. Still angry at the go out and get another full time job. Cant even play with my kids for longer than 5 mins.... Last Edited By: Imprezawrcst 05/24/08 07:07. Edited 2 times.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Sunshine56		#13	[url]	[-]
Posts: 43124 05/24/08 08:04 Mosken ezOP Board Owner Norway	You don't have any other symptoms than pain? The physiotherapy, is that the clinic in asker? How many specialists did you meet at the hospital in your city? Maybe you can ask for a second opinion at a hospital in Oslo. One of the University hospitals. Ask your doctor about that. What did you do before all this pain started? did you do sport, did take walks or did you jog in the forest? Anyone else in your family being sick? Mosken
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Imprezawrcst		#14	[url]	[-]
Posts: 10 05/24/08 08:47	Sunshine56 wrote: You don't have any other symptoms than pain? The physiotherapy, is that the clinic in asker? How many specialists did you meet at the hospital in your city? Maybe you can ask for a second opinion at a hospital in Oslo. One of the University hospitals. Ask your doctor about that. What did you do before all this pain started? did you do sport, did take walks or did you jog in the forest? Anyone else in your family being sick? Mosken Numbness, tiredness, depression, cant sleep, aching, etc Yes the clinic was at asker. I worked as a parkerings vakt and it involved in and out of the car 20000 times a day. I thought the pain in my knee was down the pressing the clutch all day but then all of the other symptoms came. Nope just me sick. Last Edited By: Imprezawrcst 05/24/08 09:27. Edited 1 time.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
jone54		#15	[url]	[-]
Posts: 610 05/24/08 20:35 Donuts Norway	Heisann Du sier at du var ut og inn av bil mangwe tusen ganger om dagen og masse clutch Tenkte på da jeg fikk dette som jeg ikke viste hva var for over 20 år siden Jeg hadde da en jobb hvor jeg løp et vanvittig antall trapper hver dag,og det ene kneet mit begynte å krangle Det var starten på min fibromyalgi Synes du må ha det kjempetøft i den situasjon du har kommet i.Sender en trøste
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Sunshine56		#16	[url]	[-]
Posts: 43124 05/25/08 11:22 Mosken ezOP Board Owner Norway	I am sorry to say I have not heard anything good about that clinic. That must have been a very long travel for you too. For some reason I don't understand, that clinic has become very popular for the doctors to recommend. And they don't even have support from the welfare as far as I know. You should not give up from only being at that clinic. I suggest you demand (you are entitled to this) your county to make an individual plan for you and your family. It is called an IP plan in Norwegian. That means you suggest together your doctor and any other healthcare worker you have been in touch with, to a meeting for instance in your home. You discuss all your problems and they suggest what can be done for you and your family. You would have to tell them whether it you need someone to translate for you. You're entitled to translation. Unfortunately all our topics about this at this board, is in Norwegian.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
esmereldet		#17	[url]	[-]
Posts: 23 05/25/08 12:07 Nordic Princess	Ask a fysio therapist to help you work out a work-out regime that fits you. Mine have told me not more than half an hour at a time on the threadmill. My head says to go another half an hour but my body knows full well that is a bad idea. Staying in the best possible shape is be all and end all to managing pain, and it is difficult to do. I suspect that you, like me, and alot of other members here are finding it difficult to get up at times, and the mer idea of going to work out is enough to make me pull the sheeps extra far up over my head on days like that. Work-out? It 's enough to get-out of bed.... BUt as long as we can work out as often as we can it is better than nothing at all. Medication and therapy is needed but telling your body you want controll is just as important. I am not saying I have mastered that yet, but I still know it is important. I feel I get no help from NAV, I am on attføring atm. And I was so mad at my doc for sending me through this, she has known me for 13 years or something. But suddenly out of nowhere she tells NAV that I have never been up to 100% of my ability as long as she has known me. And I know it sounds stupid, but hearing her say that made me feel better. I "started" this two years ago, sickleave, attføring, doctors and NAV. Not a long time at all as I understand it, and I know it will take me a long time before it is accepted that this is who I am. But half an hour on the threadmill and a doc that understands me made it all that much easier to manage. I wont be able to use the threadmill longer than till the end of june. After that it is out on the roads again until ice and snow makes that bloody difficult. I can't afford a gym. But I know I have to keep moving. SOrry this was long and mayby OT in parts. But you are not alone in this, unfortunatly for all of us. AND being on a forum like this helps alot. It might not make the pain go away but it makes it easier to manage when there are more of us. Last Edited By: esmereldet 05/25/08 12:10. Edited 1 time.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Imprezawrcst		#18	[url]	[-]
Posts: 10 05/26/08 08:48	Thank you all for your help and advice. Its all so overwhealming. Its hard to cope with everything that is happening just now. Its hard to really know where to go from here. I understand I should be pushing for more from my doctor in the way of help with pain medication and help with sleeping. I know I just be doing more with Nav trygd etc but because of being depressed I just shy away from it all at the moment. I know I have appointments but I actually get scared and fear going to these places. Not like me at all. I am usually a very open person that shys away from very little. I just feel useless right now, and the idea of spending the rest of my life sick and living on state money makes me want to throw up. God I sound so pathetic right now but its how I feel. Thanks again everyone! You have been really helpful!
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Sunshine56		#19	[url]	[-]
Posts: 43124 05/26/08 09:48 Mosken ezOP Board Owner Norway	I think you would get much better help if you asked for an IP plan, an individual plan. You don't contact NAV for that, but your County. All your helpers or potential helpers would have to meet together with you to try solve your problems. To make a plan for solving them!
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post
Imprezawrcst		#20	[url]	[-]
Posts: 10 05/26/08 10:17	Sunshine56 wrote: I think you would get much better help if you asked for an IP plan, an individual plan. You don't contact NAV for that, but your County. All your helpers or potential helpers would have to meet together with you to try solve your problems. To make a plan for solving them! But my doctor doesnt care. She says go and get another full time job, just like that! As I have said before I have constant pain and its hard to do most tasks that I have done without issue before. I cant play with my kids for longer than 5 mins. I cant walk for longer than 30 mins. I cant sit for longer than 30 mins. I cant drive for longer than 30 min. So what does she expect me too do? Find a job a can lay down with? (No dirty comments please! ) So if I dont have a doctors support an IP seems pointless. Plus I still feel that all the official organisations in Norway dont recognise Fibromyalgia as a serious illness. Anyone else feel like this? Last Edited By: Imprezawrcst 05/26/08 10:25. Edited 1 time.
Interact My Recent Posts Message Me Connection Invite Blocking Ignore User's Posts Report Post

<< Previous Topic Next Topic >>

Yuku free message boards

Anyone else as confused as I am? Fibromyalgia

Anyone else as confused as I am? Fibromyalgia

Quick Reply