Every ailment blames on Fibro?
Posted , 9 users are following.
Hi,
I am new to this forum, but have read some of the posts and found some great advice.
My problem is slightly different than most I've read. I've had an unbearable headache for two months solid. My GP ordered an MRI which showed white lesions on the pons of my brain. Along with the headache I have been dizzy, exhausted, and more forgetful then with fibro fog. My GP sent me to a neurologist who spent very little time with me and after 12 minutes, ruled out MS or anything else. His sugestion - wait 3 months and we will do another MRI and see how the lesions look and how I feel. I gave him a list of symptoms and he said "that's all your fibromyalgia." That was it.
I cannot wait 3 more months. I am on some anti-seizure medicine to help with the headache. The headache subsided the first day, but this is day 3 and it's back full blast.
My fibro diagnosis was 26 years ago. I've learned to live with a lot of pain and do my best to get through the day. However, this headache is brutal and exhausting. I'm frustrated because this neurologist just blew it off as my fibro. It really feels like it's not fibro, it's something else.
I have an appointment for a second opinion, but couldn't get in for 2 months.
So frustrated. So is my boss who chewed me out for being forgetful and doing my job half-you know what.
Anyone else have something else blamed on your fibro when you knew it was NOT fibro?
I would appreciate the support!
1 like, 17 replies
hope4cure cheryl21682
Posted
HI Cheryl,
talk about being caught between a rock and a hard spot. OMG. I can't understand why you were treated that way. How frustrating.
Best to contact them and request another medication for headaches. In the meantime ask for a faster way to schedule a appt. Are you having headaches or migraines?
Fibro is a nerve disorder over the muscles not a headache or lesions in the brain. I have had fibro for so long before there was a name for it. I was always dismissed as the pain was all in my head sort of thing or there was nothing they can do.
today I see a rheumatologist for fibro and today there is many new medications to treat fibro and a better understanding about the disease.
Ask your boss if a simple medical print out on fibro would help with the understanding this invisible disease. Some days thingis are tougher than others. Keep movin eat clean foods stay away from sugars and carbs. A good clean diet of fresh foods and veggies is very helpful.
Stay strong you are your best advocate. Educate others is important. Take it one day at a time.
cheryl21682 hope4cure
Posted
hope4cure, thank you for your response. I am a college teacher, and always talk about the invisable disabilities in my classroom. I find so many students are thankful for that discussion.
I truly appreciate your answer. I don't feel so alone. Thank you, thank you!
trisha87499 cheryl21682
Posted
cheryl21682 trisha87499
Posted
It's as if fibro is the waste bin for all that ails us. It can be very frightening.
loxie cheryl21682
Posted
Hi Cheryl. I'm not a doctor nor to I have any particular medical knowledge, but the thing is we know our own bodies better than anyone else. You have experience of fibro and the problems it causes you personally and you KNOW this is different - you should be listened to but doctors are arrogant arent they. Although recent research in Japan particularly has determined that fibro is related to disruption in certain brain patterns, that doesnt mean that everything to do with the head is automatically 'just fibro'. I have a friend who does not have fibro but has a history of terrible headaches and migraines and is undergoing further tests - because he has no history of fibro, nobody is even suggesting it. He has been told to stop taking over the counter pain meds however, like paracetamol and anti-inflammatories, as they could be aggravating the problem rather than helping it. Best advice, just keep pestering until you get some acknowledgement of the specific problem and some help in relieving/curing it. So sorry you have to endure this.
trisha87499 loxie
Posted
I totally agree, my doctor is my rock, unfortunately retiring and don't know who I will get next and he doesn't know me or my history, my current doctor knew me so well he could sense when things were getting too much for me and always helped me with alternative solutions, he listened and that's one thing I think doctors forget to do now, we do know our own bodies especially if we are constantly battling with illnesses, I know when I should call the doctor or if I can help myself.
loxie cheryl21682
Posted
I forgot to mention. I have a range of symptoms that could very easily be down to low thyroid function or Hashimotos but after just a very basic thyroid test (just to test the levels rather than full function test) I was dismissed and told 'probably just the fibro plus your age'.....GRRRRRR. I am like you, I know full well what issues fibro causes me but there's a whole bunch of problems I have that are different from the ones I'm used to and fit so specifically with a thyroid problem. I cannot convince my GP's to listen however. Very distressing.
cheryl21682 loxie
Posted
Loxie, it is SO irriatating isn't it. Luckily, my GP is fantastic. I called her this week and told her I cannot bear the headaches and memory issues anymore. She did prescribe something that helped the headache fade a bit, but it is still there.
And I agree 100%, we know when something is different with our bodies. Again, I'm fortunate to have a GP I can email every day with my symptoms. However, it's a matter of getting the specialists to listen. It is very distressing.
Amanda_Awake loxie
Posted
I also had many symptoms which could be thyroid related and was fobbed off with everything being my fibro too. Then I noticed a small swelling in the front of my throat and was sent for a scan on my thyroid which reveiled nodules and I now have to see an endocrinologist reguarly. We do know our own bodies better than anyone, if only doctors would listen to our symptoms!
gill50535 cheryl21682
Posted
Hi cheryl.
?You could go in with a broken leg and it will still be blamed on your fibro. i saw a nuerologist who told me my symptoms were psychological not nuerological so i know how you feel about being fobbed off.
?I.m still not convinced that in my case it's not MS instead of fibro or if not both so i'm going to be demanding another MRI in due course.
?You need to keep fighting as far as all the researchi have done if you have whitelesions on your brain that is MS.
?I wish you all the luck in the world.
?Keep fighting and with your headach go sit in a&e and tell them it's unbareable. they may even admit you and do another MRI in a few days..
?I had a migrain for a month after an accident and my gp fobbed me off so i sat in a&e and demanded a scan. i ended up being kept in for a week with a swollen brain.. doctors aren't always right. KEEP FIGHTING!!.
XXX
cheryl21682 gill50535
Posted
Thank you gill! You're right about the broken leg. I was relieved when I got my diagnosis so long ago, but now it's just the bin for everything they can't, or won't try, to figure out.
My memory issues are very frightening. When I have a fibro flare, I've always had some fog, but this is different (again they won't listen).
I will keep fighting! I have to thank all of you who responded. I needed to hear that I am not going crazy. After being verbally lashed by my boss last week for forgetting something and not doing my job up to par, I needed some reminder that I have worth.
THANK YOU!
vicky89033 cheryl21682
Posted
joyce_97261 cheryl21682
Posted
Sorry you are suffering so badly. I want to bring you some comfort in knowing migraines can be what you're suffering from. I too have white lesions and suffering with chronic daily migraines. The migraines started the same time as the Fibro over 20 something years ago. It's good your getting a second opinion and make sure you write down questions to ask. Peace and blessings.
cheryl21682 joyce_97261
Posted
Thank you Joyce. I've had migranes and this seems different to me. I'm extremely exhausted all of the time, along with dizziness, and disorientation. It's comforting (for lack of a better word) to know that the lesions could be from migraines though.
Thank you for your insight,
Cheryl
Maggers cheryl21682
Posted
If you are still suffering I would have a look at giant cell arteritis. my other half had this diagnosed after weeks of severe headaches. He has been on medication ever since and no longer has the headaches. Whilst doctors love to put everything down to fibro we all know it is not always the case. Hope you are feeling better.