Newbie!! Needing some advice
Posted , 17 users are following.
Hi there I am new to this site or any forum for that matter. I have come for some friendly advice as am at my wits end. I am a married 36 year old mother of 2. I was diagnosed with fibromyalgia around 4 years ago. I am on no medication at all. I am struggling with my symptoms and my doctors for any help. I feel I am declining. My joiny pain is out of control. I am always in a horrendous level of pain to the point where I cry through it most days. worst being in my thinghs feeling as though they are on fire. This has now deepened and I am expereincing excrutiating pain in my knees and hips. I am very stiff, very weak. To the point where the mental exertion to put on foot in fron to the other or to keep a grip on something in my hand is exhausting. I am like a zombie. Permanently. I don't sleep. I am permanenetly thirsty. Have the sensation of my wholebody needing to stretch and click although doing this bring no relief. I have been back to docs to request a blood test which has brough back high levels of iron in my blood. 245 whatever that means. Told me t have anothe r test in 6 weeks. I am grinding to a halt. I have 2 children to raise and a jo to go to. I struggle to drive sometimes the pain in my legs holding the bite!! I eat well, never smoked don;t drink too much alcohol. walk when i can. I am desperate. I can cope with being tired and sore all day have done for years but this is on a new level. I can't cope with it and i fall down quite a lot, drop tings quite a lot, don't concentrate much, forget things.
Anyone else had similar issues/feelings/symptoms? What would you ask from your doctor? The past 3 times I have been to see a GP they have told me they think i would cope better with my pain if I was happier so have prescribed me an antidepressant. I got up and walked out of their office. The other gave me co-codomol to try for the pain!!! Joke.
Thanks for reading!!
Kate x
0 likes, 23 replies
lindsey65522 kate71023
Posted
I follow this site for advice on how people cope with this awful pain, i have been diagnosed with fibro for around 5 years, although i think i have had this for almost 20 years,
I was refered to a rheumatologist a while ago, who i found a little bit rude was not really helpful and asked me to have a hiv test which has still now scared the life out of me, i refused as i felt not to sound rude but in the catagory that i needed one, and he came out with it without asking any history of my private life at all. I never went back to see him after that, but it has stayed in my head ever since.
Lots of people descibe buring pain which i dont think i get, mine is like a constant relentless ache all over, like when you have the flu and you have that awful muscle aching thats what I have mostly, i also feel itchy some times and sometimes have a small rash on my back and stomach only, do anyone ever feel itchy with this???. I have upset stomach sometimes, and now have pain in my jaw and ear which my gp said fibro affects. I dont really sleep and wake during the night with pains in my toes and feet.
I do feel sometimes that I am going mad with all these symptons and think is it all fibro, can this illniss affect so many areas, im also diabetic so when i go to the gp this is his main concern so not really any time to deal with the pain side, the last time i was there i cried my eyes out and said i cannot cope any longer with this, and he gave me anti-depressents which i havent took as I still have to work full time and dont know what the effects of these will be. He has refered me to the pain clinic which i am waiting on so maybe they may be a little more helpfull.
Sorry to have waffled on but I have really got to the end with this and dont know what more i can do, or try.
glenn06752 lindsey65522
Posted
Hi Lindsey - so sorry to hear you're suffering and I am hoping the pain clinic helps you to some degree. Some of them are excellent. Too bad you ran into a Rheumatologist that wasn't much help. This is supposed to be their field and sadly enough, we haven't come too far in diagnosis and treatment of Fibromyalgia. Being a diabetic must make it twice as difficult for you. Your itching sounds more like an allergy, or even your diabetes, but could also be Fibro related. Fibromyalgia mimics and mocks just about everything.
I must give you credit however for continuing to work and somehow finding a way to cope. Like you, I suffer miserably but still try to live a normal life, work full time and try to exercise as often as I can. Even walking will help Fibro symptoms because I think there's a side to it that's circulatory.
Also, like you, I suffer with stomach issues, irritable bowel and bladder and most days feel like every muscle in my body aches. You described it best, by saying, it feels like the flu. The pain in your toes and feet could be fibro related or could be your diabetes. A doctor would know better. My toes and feet hurt but I realize I have an arthritis condition in my toe joints. Sleeping is always an issue with Fibro and sleep is so important, yet none of us get the proper amount of sleep because our wiring is askew with Fibro symptoms.
I never went the anti-depressant route. Couldn't handle the baggage that came along with them. The only med I do take is a small quantity of xanax at bedtime to help me fall asleep. Still staying asleep, is always an issue.
I hope you feel better soon and the pain management helps you out. You've suffered far too long and somewhere there is a doctor that can help you. It's just finding the right one that knows how to treat Fibromyalgia. I find the older doctors really are the least knowledgeable with Fibro.
I wish you the best - stay in touch and let us know how the pain management worked out for you.
My Best,
Glenn
Vitav lindsey65522
Posted
Hi Lindsay, It's so important to be tested for everything before you can truly have a diagnosis of fibro. I have had every test, seen every specialist out there. I will be having a colonscopy next week. If you don't get tested you won't know what's really wrong with you. Go get tested! Prayers your way!
lindsey65522 glenn06752
Posted
Many thanks for your reply and advice.
I was at my GP,s last week and his concern was the diabetes, theres never enough time to go through all the story of the fibro, i told him i now have pain to my jaw and ear he just said it effects it, i started to cry and said i am really struggling now and was just offered anti-depressants which i am not happy to take, i work full time and scared of the effects.
Todays pain is flank pain to my back, itching still and feel sick, its something different every day, i really cannot wait to get an appt with the pain clinic to see if they can offer or advise on something else.
I will let you know how i get on with the clinic if i ever get an appointment, as this is really started to get me down.
Hope your having a better day.
Best Wishes
Lindsey
glenn06752 lindsey65522
Posted
Hang in there, Lindsey - I hope relief is right around the corner for you.
I'm dealing with such bad tinnitus that it's really starting to cause bad anxiety. Not sure if the tinnitus is part of the fibro or not. My guess is I damaged my ears over the years, beginning when I was a child.
Anyway, please do let us know how the clinic goes. None of us should have to suffer. You would think in this advanced day of medicine, there would be something for every last one of us.
Thanks for the reply!
Glenn
lindsey65522 glenn06752
Posted
Thanks for the reply, i will let you know.
I have ear pain now constantly and i understand the anxiety to the point i honestly think im going mad, i am constantly googling symptons which i know is the worse thing to do but cannot help myself.
I will be glad to see some one i really will.
Thanks
Lindsey
kiki74 kate71023
Posted
Sorry to hear what you're going through. I was diagnosed 2 years ago. The list of symptoms change and so does the severity. While trying to get a diagnosis I saw multiple doctors and had 25 vials of blood drawn for a multitude of tests to rule everything out. I would cry when they kept coming back negative all I wanted was an answer as to what it was and how to fix it. I got an answer but the fix was just as hard as the diagnosis to come across.
I tried pain relievers and anti inflammatory drugs. They were of no help. I felt doped up. My sensitivity to meds made it impossible for me to function. I was offered Lyrica and Cymbalta last year after the other meds failed and I declined. Side effects scared me.
I changed my diet to exclude sugar, dairy, caffeine, gluten and nite shade vegtables. I also started taking supplements (magnesium, D, B, Sam e, probiotics, coq10, tumeric) started doing physical therapy and accupuncture. I was doing well until my niece had her immunization shots and caused me to have an epstein barr reactivation. I wound up being in as much pain as I had when I was first diagnosed. Couldn't lift my legs. They felt as they were in cased in cement. Aches, pain and exhaustion are daily battles after almost a year of managing this disease. Frustrated cause I thought I had it under control and I could finally go back to work.
It is trial and error. Good days and bad. You will have to find what works for you and rant when you need to on here. We understand where as people may empathize but don't understand. We are here for you.
jazin95 kate71023
Posted