Aa
fibro
I have had fibro for a number of years now . but I think it could be something different .but every time I call my doctor with a symptom he says its your fibro .. iam so ill I cant leave my house I get to speak with doctor over the phone its got so bad there is times I sit and think I wish I had a lot of money why so I could go to a clinic to end this suffering I feel down I was a party girl out going fun and so much more this fibro has stolen my whole life took away the person that I once was . I live day to day not being able to arrange a coffee or a visit to see my mother I don't have any mates any more I feel very alone ..my flare up over the last 2 years don't go I no longer seem to have a break in between . every day I hurt every day I cant think or do the simple task. my legs and arms hurt the most and my left lung and rib .the tops of my feet feel like thay are in a coal fire and burning with pins and needles from my feet to my knees but its painful my groin hurts even worse my brain feels like mush cant think straight doing something simple takes a lot of time as I have to keep going over and over the same thing step by step to rember what iam doing its hard to explain this part its like being a child again .. lets say iam putting a pleat in my hair but I cant cause my arms ache but lets say iam it takes me a long time or I will give up because trying to rember each step becomes a challenge its something you learn from a child but my brain cant seem to cope with the steps I don't know am I making sence I don't know .. my vision well I cant go out alone if I could go out because my eyes well I have to close one and try to see or close my eyes till near enough closed to try focus I have nearly been in lots of accidents I also cant seem to judge how far away something is like traffic to cross a road its taking a long time to write this and this is a gd day for my eyes iam also getting confused a lot these days with simple tasks and it upsets me because I know I could do this before its like having dementia yes that's the correct word for me to explain when I sit up my tail bone hurts my legs swell really bad from time to time my hands feel so tight and viens on my hand bulges I have so much yet I feel alone and suffering I have no qulity of life my children keep me going I no longer can take them days out infact I don't want to go out iam scared I don't want to be seen in a wheel chair so if I do go out once a month or when ever I will struggle along the road in so much pain and try a brave face knowing that that walk round the corner is putting me in bed for weeks ata time also trying to spell things my brain knows the word dog is spelt dog. but I have to think hard because yes my brain is telling me its dog but the I will type bog its hard to explain sorry if iam going on but I think iam confusing my self ? really I have to stop and think a lot of time before I write or even speak iam only 36 but I feel like an oap who cant do nothing its difficult but who do we turn to when people say it is only fibro well this illness that people call invisible is taking away my life or has so please tell me if you feel sever as me what support do you have from doctors ect and what can you recommend for me to have a life that's just exsisting day to day tomorrow I could feel different from today worse or better better meaning I can move from bed to sofa lol but my children keep me going if I didn't have to still try get them up for school or college I think my body would give up but thankfully I have my children thankyou all for reading this again sorry if I went on or this seems confusing forgive my fibro brain :)
I have had Fibromyalgia, Chronic Myofacial Pain Syndrome, Thyroid disease, severe Osteoarthritis, Chronic Fatigue Syndrome, and so much more for over 15 years. I have and continue to use essential oils, biofeedback, and hypnosis. I have had 22 lifetime surgeries. Now I am having some very odd neurological symptoms. We did the MRI of brain, cervical and thoracic spine. I have white matter lesions in the frontal region of brain, little lesions from baby strokes, loss of neuronal signal, or dead, disolved nerves. Did the spinal tap study, which was normal. Neurologist tells me all of this is due to Fibromyalgia and the high dose of opiate medication I am on. So does Fibromyalgia worsen with age? Does your body spasm, causing 11 on the pain scale and blood curdling screams, tremors, hearing disappering for 16 days (and the ENT can't explain it), vision doubles, severe cognative changes, legs working some of the time, ice pick stabbing in 1 area of your head along with slurred speach, pupils not the same size, my husband ready to bash in the ER doc's head as he implies I have abused my drugs, when I won't even take them as prescribed? I use a transdermal duragesic 50 mcg/hr pain patch. Which I change every 72 to 80 hours instead of the prescribed 48 hour change. I have other medication for break through pain and muscle relaxers. I was prescribed 90 in December of 2013 and still haven't used them all. In the last 10 months I have had 3 surgeries including a full replacement on my left shoulder. The right one only required 4 surgeries. Neurologist said to go back and see Lucinda Bateman, MD. the top CFS in state who diagnosed me 15 years ago. Her office doesn't want me. I guess I will chalk it up to me being nuts, doctor's continuing to 'practice' medicine because that is all they can do is practice until they get it right, which will never happen in this world. I am done, no more specialists, I will not be labeled as a doctor shopper. It seems once you have been diagnosed, everything that comes along gets pushed a side to the original diagnosis, even when you know something else is very wrong and so does your family. I wish the remarkable stem cell replacement therapies being done could be used to reset my autoimune system and make me feel better. I have just watch my friend who has suffered from CIDP go through this process. It has been a miracle watching her. After 6 years of horror, she walks, talks, feels, and enjoys life. So now I sit and wait for the next health crisis. Perhaps kidney, liver or lung failure from the opiates, maybe a massive stroke from all the mini strokes caused by 'Fibromyalgia'. Whatever it may be I am tired of the fight. I pray the crisis will be the one to take me home and out of this mess! I am so sorry for the long rant. Frustration is really overwhelming me.
So you had fibromyalgia for a few years now.. you know in your mind is telling you that there's something else.. and you're right. Fibromyalgia is only a word to describe a syndrome of symptoms and its not a disease. There's actually something underlying that's causing it.. conventional med doctors won't help you.. only try to numb the pain or treat whatever symptom you have.. ive been on almost every anti depressant out there along with all sorts of pain meds and other medications which either had horrible side effects or withdrawals or it was just my body bring really sensitive to it.. my body was saying these pharmaceuticals were all toxic and my body crashed even more. I understand what it's like to be bedridden, unable to do the normal activities of daily living, cooking cleaning, bathing, showering.. Feeling just useless from the fatigue, muscle joint bone aches, burning sensation.. and even had social anxiety, depression and fear of everything.. always anticipating what's next.. constantly worrying about what's next..
All this is caused by fibromyalgia they say? But remember I said fm is not a disease, is a word for a syndrome of symptoms.. and you're right I know you are thinking there has to be more. Have you tried to go to a naturopathic dr? You or someone who is willing to support and help you can research and find one that does comprehensive testing to find the underlying cause. Because there is.. most likely hypothyroidism thay conventional med doctors won't find with their testing.. it could be your whole endocrine system dysfunction having a domino effect, from the hormones in your brain to your exhausted adrenal glands which help with stress, and even estrogen/progesterone imbalance.. plus there's alot more.. try researching it online. They may give you bio identical hormones and other treatments that help your body set back to recovery.. it helped me alot.. only thing is that it's expensive and usually don't take insurance. Depending where u are, you can find a naturopathic doctor that costs a little less but you have to really fight through this.. have strength. . Research online.. dont settle when they tell you oh Its just your fibromyalgia.. cuz theres something that's causing the fibromyalgia and you can do something about it. Don't give up the fight and keep pursuing..
I hope you feel better soon.
All this is caused by fibromyalgia they say? But remember I said fm is not a disease, is a word for a syndrome of symptoms.. and you're right I know you are thinking there has to be more. Have you tried to go to a naturopathic dr? You or someone who is willing to support and help you can research and find one that does comprehensive testing to find the underlying cause. Because there is.. most likely hypothyroidism thay conventional med doctors won't find with their testing.. it could be your whole endocrine system dysfunction having a domino effect, from the hormones in your brain to your exhausted adrenal glands which help with stress, and even estrogen/progesterone imbalance.. plus there's alot more.. try researching it online. They may give you bio identical hormones and other treatments that help your body set back to recovery.. it helped me alot.. only thing is that it's expensive and usually don't take insurance. Depending where u are, you can find a naturopathic doctor that costs a little less but you have to really fight through this.. have strength. . Research online.. dont settle when they tell you oh Its just your fibromyalgia.. cuz theres something that's causing the fibromyalgia and you can do something about it. Don't give up the fight and keep pursuing..
I hope you feel better soon.
I am so sorry to hear of your pain and suffering I have fibromyalgia too and children to take care of althought sometimes I honestly wish "if I had bad diabetes, or kidney failure or MS or something like that I wouldn't be suffering anymore but at least people would take me seriously and maybe I would get some relief" I would suggest that your doctor assess you for ADD as well as many of the brain chemicals that effect Fibro cause other issues too and taking the medication for ADD has helped me with focusing. Otherwise the gabapentin takes down my general pain level, but there have been times when I have had pain "attacks" so bad I need to be given narcotic pain medication. Don't forget your doctor is there to take care of you and you have ever right to ask for what you might need. Good luck
i know how you feel..my life was full and happy. now i am shut in.
2 years now and i still hope something will help..tried cymbalta, lyrica did not work.
i wonder about sevella> sp?
i take pain meds and i can function a little.. now we are in winter and i have not been out in a week again…depressing..
when summer comes i feel better so we are going to move south..no more winter for me..!
best to you ..
2 years now and i still hope something will help..tried cymbalta, lyrica did not work.
i wonder about sevella> sp?
i take pain meds and i can function a little.. now we are in winter and i have not been out in a week again…depressing..
when summer comes i feel better so we are going to move south..no more winter for me..!
best to you ..
Oh my dear!
The following is a response of mine to another member from a few weeks ago, which may apply to you as well.
"Dr. Lowe from the Fibromyalgia Research Foundation supports the premise that most fibromyalgia patients are either hypothyroid or thyroid hormone resistant.
The list of low thyroid function symptoms is pathetically long!
Have you ever been tested for thyroid function?
The preferred tests to get for accurate thyroid function are: Free T3,Free T4 and reverse T3.
As a screening test for low thyroid, you can do Dr. Barnes Basal Temperature Test, the golden standard until synthetic thyroid supplements and new serum testing got invented (same corporation) and now half the patients around the world (exaggerated-lol!) are running around from doctor to doctor and from test to test, most of them underdiagnosed, undiagnosed, misdiagnosed, and consequently under- treated, untreated or worse, mistreated!
Dr Barnes and most of his his students today like Dr. Mark Starr who practice according to his methods, after diagnosing and treating their patients properly for hypothyroidism, develop almost: no lupus, no fibromyalgia-like conditions, no chronic fatigue, no heart disease...
It is beyond me, how conventional medicine, has managed to keep a lid on such amazing and groundbreaking work, considering the great significance of our hormonal system, which controls every aspect of our health.
Viral load and unresolved stress factors significantly increase your risk to
pathogenic bacterial, parasitic or fungal infections, by lowering your immunity.
There's the possibility of low grade pathogenic mycoplasma and co-infections, which unfortunately are very common with the majority of CFS and FMS sufferers, according to the leading expert in this field, Dr. Garth Nicolson.
He is a part time MedHelp contributor and you can do a search here, for more details.
These infections are notoriously difficult to detect and to treat!
Your doctor won't know much about this either."
If you need more information on this or anything else, let me know, however, I suggest you consider assigning someone close to you to act as
a health coach. How about your mom? Is she capable to help you follow through with some of these ideas?
Best wishes.
Niko
The following is a response of mine to another member from a few weeks ago, which may apply to you as well.
"Dr. Lowe from the Fibromyalgia Research Foundation supports the premise that most fibromyalgia patients are either hypothyroid or thyroid hormone resistant.
The list of low thyroid function symptoms is pathetically long!
Have you ever been tested for thyroid function?
The preferred tests to get for accurate thyroid function are: Free T3,Free T4 and reverse T3.
As a screening test for low thyroid, you can do Dr. Barnes Basal Temperature Test, the golden standard until synthetic thyroid supplements and new serum testing got invented (same corporation) and now half the patients around the world (exaggerated-lol!) are running around from doctor to doctor and from test to test, most of them underdiagnosed, undiagnosed, misdiagnosed, and consequently under- treated, untreated or worse, mistreated!
Dr Barnes and most of his his students today like Dr. Mark Starr who practice according to his methods, after diagnosing and treating their patients properly for hypothyroidism, develop almost: no lupus, no fibromyalgia-like conditions, no chronic fatigue, no heart disease...
It is beyond me, how conventional medicine, has managed to keep a lid on such amazing and groundbreaking work, considering the great significance of our hormonal system, which controls every aspect of our health.
Viral load and unresolved stress factors significantly increase your risk to
pathogenic bacterial, parasitic or fungal infections, by lowering your immunity.
There's the possibility of low grade pathogenic mycoplasma and co-infections, which unfortunately are very common with the majority of CFS and FMS sufferers, according to the leading expert in this field, Dr. Garth Nicolson.
He is a part time MedHelp contributor and you can do a search here, for more details.
These infections are notoriously difficult to detect and to treat!
Your doctor won't know much about this either."
If you need more information on this or anything else, let me know, however, I suggest you consider assigning someone close to you to act as
a health coach. How about your mom? Is she capable to help you follow through with some of these ideas?
Best wishes.
Niko
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