Hi,
I’m brand new to the community and newly diagnosed. I will try to briefly tell you my road to diagnosis.
I have been strugling with sleeping, fatigue and sleep disturbances since about a year ago. I related it to stress and just tried to rest more. It didn’t work but I kinda shunned it. In april I strated getting piercing pain in both of my hips accompanied with difficulty walking. A radillogist refered me to a lumbar scan. They found a “herniated discus” and proceed to give me therapy for it. I got no relief. The pain has by the spreaded to my lower back, hips, thighs and the fatigue became hard to deal with. I was sent to do an abdomen scan and some basic bloodwork which both checked put. I knew I was missdiagnosed, and seeked out another consultation. I was then told I have a sciatic nerve and no herniated discus, the doctor ignored me when I insisted the pain was in both hips, liwer back and thighs. I was again refered to physical therapy. This time I was told I had bursitis on my back, butt and hip musles. I received 4 steroid shots and got no relief. The pain has spread to my neck, shoulders and I was getting migreanes daily. I literally felt helpless.
One of my biggest problems is that I work full time, I live alone and my boss gave me zero understanding. I have been working full time and tried to ignore mist of the symtoms as hard as I could as I was constantly threatened (between the lines) with termination if I took days off.
Last week I phoned to book an apoontment at a private neurological clinic, at a suggestion from my gyneacologist friend. The doctor answered the phone and told me they couldn’t book me until next thudsday, but asked me to tell him ehat was wrong over the phone. She was kind and lustened to me. That was the first time I heard the word fibromyalgia. She told me not to be afraid and she will give me the first avaliable appontment. I will see her this week.
The following day I managed to secure an exam with another neurologist, she examined me and gave me the diagnosis of fibromyalgia. She wrote oit a perscription for Xanax and two different pain killers as well as a blood test fpr thyroid and an EMNG. She never gave me one word of advice. I have since seen another neurologist who refered me to a rheumatologist and futher tests for MS and Lupus, that’s next for me.
I am not sure what the future holds but right now it’s quite bad. I am weak, tired, I have a lot of sleep disturbances, my pain is constant, I have trouble walking and functioning. I also feel abandoned by friends, missuderstood and betrayed by coleagues and feel very hurt by comments of family “you don’t look like there is anything wrong with you”, “you should just be more active and exercise” , “you look perfectly fine, no one would say you are not in perfect health”. I know they mean well but I just still feel people “accusse” me of making it up. I don’t want to feel this way. I want no pain, and to be happy and full of energy again. I feel so guilty that I have changed and my life has changed.
I am running out of money, I will probably loose my job soon and as hard as I try I am finding it difficult to see the light at the end of the tunnel.
Thank you for reading.
Reading you stories so far has touched me and made me understand we can support eachother, I wish there were less of us but I am grateful for any support I recieve
Thank you for joining us. I have found this to be a most supportive community. You are among friends now. It breaks my heart to read about yet another person suffering through the ignorance of others through misconceptions about your health. With this illness, you might act perfectly fine for a few minutes to a few days, and then be followed for a month where you can hardly get out of bed. Your life is no longer your own. You can not plan to get up for work or be some place at a specific time because your body betrays you. If you do make it to a scheduled event, there is no way to know how your body will react to the situation. I never know if I will need me cane, my walker or my wheelchair, so I drag them around me with all the time. Always hoping for the best but planning on the worst.
Thank you for telling us your story. Many members are without any support when they join this site. We know that we don't look sick, but we just want our loved ones to believe us when we tell them that we feel so unwell.
So, we are so grateful to join this community where we are accepted and believed and supported. Just keep reading and you will find how some people cope with their pain. One of the difficult things is to find a doctor who believes us and will listen to us and care about our suffering.
T am so sorry to hear your story but that is a very typical story and is how it plays out for many fibro sufferers it is very hard to find much kindness and understanding unless you are lucky enough to get a fibro freindly medical professional straight away if not don't waste your time and energy trying to convince them they will not change there way of thinking and you will leave your appointment feeling worse off then when you went in, A good GP is essential because you will need some medication to help you have some control over the pain which can be so debilitatating. The fatigue is just as debilitating as well as the trouble with sleep. People with fibro do not fall into the rem cycle of sleep which is the sleep that is restorative for your bodies energy and helps with clear thinking and just a feeling of wellbeing it is a complex condition and unfortunatley there is not of sympathy out there in the real worl from some medical professionals, even some partners freinds and families depending on how your family dynamic works and I really hope they are supportive fore your sake. employers may start off supportive but it is extremely hard to carry on full-time emploment without pushing yourself into a major burn out were you are physicaly incapable of work at all it is a hard truth you may be able to handle part-time work but to function moderation has to be considered in everything you do. This is a very good site people are kind and understanding we do know how you frll and the challenges you face please send me a freind request and I will be happy to answer any questions you may have. I have had fibro for 20+ years and was a emergency room nurse I had to resign because I was sicker then the patients I was helping I loved helping people it was my life but I am a full time advocate for people just like you who are confused and troubled by what's happening to them it does change your life and makes you reasses everthing in it don't doubt yourself you do have a real condition with real symptoms and just know that I believe as do everybody on this site so stay strong and believe what your body is telling you Warm Hugs Jeannie
So sorry you had to go through all that turmoil. I think many of us have been to numerous doctors with few answers. I have suffered with Fibro for the past 5 years and did not know what it was. I was officially diagnosed last year by my primary doctor and three rheumatologists. I have many sensitivities to medicines and therefore could not take the three meds that are prescribed for Fibro (Cymbalta, Lyrica and Savella). I also have DDD and a list of other medical conditions. Up until last year, I was also working FT and going to school at night. I honestly do not know how I found the energy to do both but I almost had a nervous breakdown. Last year I was working FT at a hospital and 4 months into the job all my symptoms got 100% worse. I lasted until my one year anniversary and then decided to go out on a medical leave. My supervisor was not supportive and basically told me that everyone had medical issues (including her of course) and to "suck it up". Needless to say, after being out for 6 months on state disability, I lost the job however when I did go out, I filed for SSD right away. I got denied twice and recently retained an attorney.
I did go to a specialist (Fibro, CFS, Migraines) last week but unfortunately he did not take insurance but I was lucky because my fiance paid for it. He worked out a treatment plan with me and gave me options for different medications. One of the meds that I hear has helped alot of people is low dose of Naltrexone. I am waiting for doctor to call it into pharmacy. The other meds I am on is Tramadol and Oxycodone for back pain. I can email you the treatment plan he gave me ...maybe it will help you or give you different options?? It is too long to type here..lol
It is really difficult to hold down a job with all these conditions..I really feel for you. I remember being totally miserable at work and very irritable. I was getting migraines every eight days and was walking around feeling "stoned" out on pain meds. My lower legs and ankles were swollen every night and to top it off I had a long commute home! I also starting having panic attacks, something which I never had before. There comes a day when you have to say...enough. Sorry this is so long but I hope that you find the right medications and other treatments that will help you to feel better!
Also, having family and/or friends support is very important. This group also helps because everyone understands.
You have come to the right place , to gain an understanding of how to manage fibro , it’s very complex, but I can tell you with certainty , talking with others who suffer has made all the difference in the world ! Both physically and emotionally !
What I have come to accept is that living and managing this, is a full time job
I can totally relate to your story and thank you for sharing it , it takes me back to when I was first was trying to deal with all that you are going through and it does get better,it helped me see just how far I have come in 2 years, keeping a journal of your symptoms and a list of the dr’s you have seen helps keep it from getting so overwhelming.
Acceptance was the hardest one for me, it takes time , we go through the grieving process of the life we had…
. Stress management is important , taking care of you, putting your self first & letting go of people who don’t care or try to understand is also hard, but it comes in time.
Take one day at a time, stay connected with us , having support from people who understand is so helpful, stay as positive as you can
Working full time is very difficult , ( hang on as long as you can ) in my last year of working I got FMLA and had to use one day a week, till even 3 days became very difficult … Short term disability, turned into long term disability & now waiting on SSDI…I do miss my job everyday, and of course the money…
Some how it all works out… I get a lot of strength through faith & prayer
I really appreciate everyone taking the time to read my rambling and I really didn’t expect so many kind words. I have been reading other people’s posts and it’s ibcredible how similar our stories are yet a road to diagnosis is so long.
Tommorow Im going to do some Lupus and MS testing so wish me luck, will keep you posted.
Welcome!! This site is wonderful for support and ideas!
Look on Amazon.com for books about Fibromyalgia. I know there are used books out there that are for your family and close friends to read. I have not read it but have heard others talking about it. It explains your symptoms, your mood swings, your fibro fog, your feelings, and even some possible triggers. It is important for those close to you to understand this!
Heck, maybe you can search and ind somfthing on the internet for free for them to read. It is better than you trying to keep telling them! I know we are all taught not to worry about what others think of us, but it does hurt when people we care about do not believe us!
Don’t be afraid to post on here, we are all going through similar problems and can help each other through them!!
Yes! I work full time too and can not afford to lose my job. I got the paper work for FMLA and my doctor filled it out for me as wll! I use it for my appointments and on the really bad days that I just can not work! I think this would be a wise choice for you, can save your job and help relieve some stress!!!
Welcome Ivana! You've come across a good thing here at Bens...and I can tell with all the responses that you got that good information is already coming your way. Hang in there new friend....the shoulders of many are here for you!
Sometimes I find a hot shower helps, as long as you can tolerate standing in there, then I climb into bed while I’m still warm and turn on my electric blanket. I find the moisture of the shower and the heat from my blanketed bed help me tremendously, I also have a cat as a service animal, with the help from my psychiatrist, that showers me with the much needed love and support. But the first thing I learned was not to push myself beyond physical comfort. Make sure you get out of bed everyday, even if it is to get something to eat and to feed my cat. Sometimes I get lucky and find I don’t feel too bad and can accomplish a little more than the minimum, so I do a bit more. But don’t over do it. Because you are likely to physically pay for it tomorrow. I hope I gave you a little help. Good luck. Carla
Good luck I’ve been to two rheumatologist. They don’t seem to have any answers or compassion, at least the ones I’ve been to. I get more from my GP who is a physicians assistant, an younger. He seems to be more up to date, and sympathetic.
HI IVANA I KNOW HOW YOU FEEL AND SO DO THE OTHERS WE DONT LOOK SICK AND PEOPLE WONT ACCEPT WHAT WE SAY IM SUPPOSED TO GO TO MY SISTERS HOUSE SHE HOSTS THANKSGIVING EVERY OTHER YEAR THE OTHER IS SPENT WITH MY BROTHER-IN-LAWS FAMILY IN KENTUCKY.I TOLD HER I WOULDNT BE COMING BECAUSE OF MY FIBRO ITS A 3 1/2 HOUR DRIVE. I WENT IN JUNE FOR MY ALJ HEARING I SPENT THE NEXT 6 DAYS SITTING ON A PILLLOW.IM DOING MY EXERSISES IM SUPPOSED TO EXCEPT FOR THE AQUA EXERCISES. THR HOSPITAL POOLS A CONSTANT YEAR ROUND 85-90 DEGREES. THE YMCAS POOL ISNT. I SAID ID USE THE POOL AND ID BE BETTER IN DECEMBERAND ID COME.SHE THINKS I DONT WANT TO BE AROUND MY DAD.HE WAS VERY VERBSLLY ABUSIVE TO ME AND VERBALLY AND PHYSICALLY ABUSIVE TO MY DOG HEIDI.WE MOVED TO A VERY NICE PLACE.HE ISNT THE REASON IM NOT GOING.IM THE REASON.IF I GO AND COME HOME AND CANT TSKE CARE OF MYSELF AND HEIDI.ILL HAVE TO HIRE SOMEONE FOR ME AND BOARD HER AT THE DOG HOTEL.IF THAT HSPPENED ID TELL HER I CAME BECAUSE YOU INSISTED AND NOW I CANT TAKE CARE OF ME AND HEIDI. YOU CAN COME AND TSKE CARE OF ME. SHED SAY IF YOU KNEW THIS COULD HAVE HSPPENED YOU SHOULD HAVE STSYED HOME AND IM NOT COMING TO TSKE CSRE OF YOU. YOU SHOULD HAVE STAYED HOME. SHES MAD AND SO IS DAD.I TOLD THEM BOTH IM IN MY BODY AND YOURR NOT.I HAVE TO LIVE WITH THE PHYDICAL CONSEQUENCES OF MY ACTIONS AND YOU DONT. ITS MY BODY NOT YOURS. YOURE NOT IN MY BKDY AND YOURE NOT.IF YOU CANT UNDERSTAND THEN ITS YOUR PROBLEM.THEYLL BE TOGETHER TOMORROW.IM HELPING WITH OUR TOWNS THANKSGIVING DINNER THEN COMING HOME AND HAVING THSNKSGIVIND DINNER WITH HEIDI.JUST TAKE IT 1 DAY AT A TIME STAY AROUND DUPPORTIVE. PEOPLE. THINKING OF YOU AND THE REST OF THE FIBRO FAMILY HAVE A. HAPPY THANKSGIVING
Hi Ivana & welcome to the site! It is so hard getting a diagnosis, let alone finding a doctor who cares. It takes a lot of time & frustration but don’t give up! Once you get into a better place, you’ll be glad you didn’t give up. Fibro is a fight every single day but don’t let it get you down. I wake up every morning and tell myself out loud that I’m going to kick fibro’s butt! It doesn’t always work so well but it’s helped to bring back the spark in me.
As for your friends, most people will shy away from something they don’t understand, especially when they don’t have the first clue how to help you or relate to what you’re going through. This site, the people here, have all been so wonderful to me & I’ve finally found a place where I feel like I belong. That’s why I became a moderator, so that I can support others. I hope you find what you are looking for here. We havr numerous resources! Don’t hesitate to ask questions either, we’re all here to help & support each other!
You are all so kind, being here for just a few days and reading your replies as well other discussions has given me enormous emotional strenght to stay strong. Thank you all, you are truly wonderful people
