Fibromyalgia Support Group
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Hi all,
I hope you don't mind me asking a question here since something came up in my NZ Fibro support group after one of the members suggested I get tested for MS.This is something I have never even considered before.
Up until a recently I have been doing pretty well, managing to teach part time and have very active weekends, a lot of travel, walking, even some cycling and helping my partner with his business. Symptoms have been pretty stable and manageable and I felt hopeful. However some new and mysterious symptoms appeared in the last 2-3 months which have left me feeling anxious and puzzled as to whats going on.
It started off with blurry vision, general weakness and then dizzy spells. At the same time recurring cystitis and over-sensitive bladder, getting up at night maybe 4 times for toilet visits (never had any bladder issues previously). Dizzy spells and balance got so bad I had to cancel my classes regularly and GP thought I may have Labrynthitis (temporary ear infection) as I also had Tinnitus and some vertigo attacks. Have seen an ENT specialist three times now and he put me on short dose of Prednisone and prescribed drugs and supplements for the nervous system.. He says there is no sign of infection in my ears but something is not right, not sure what.
Now the scary bit is that at the same time as all of this my legs have stopped working properly and have gone all weak and uncoordinated. Alongside the balance issues its meant being pretty much housebound over his hot summer as I have no car and we live on a steep hill, so getting around has been difficult. Some days Ive had to hold onto my partner to be able to walk home as the balance and weakness have got so bad.
Now, my legs have always been the part of me that worked the best! even when Ive had nasty fibro symptoms, neck injury leaving my arms weak, my legs have managed to do their thing very well up until now. We regularly take walks of up to 3 hours at a time in the evenings and weekends and now I can barely get around. I'm also getting a lot of 'pins and needles' sensations, tingling and numbness in arms and legs, feet going dead, restless legs, etc, definitely a nerve thing and not a muscle thing. Not my usual Fibro symptoms at all.
Any suggestions or info you can give me would be welcome as I've felt tearful and hopeless lately not knowing whats happening and unable to do my normal routine activities. in addition,having crushing fatigue meaning I fall asleep twice during the day and have no energy to do anything. I am a freelance teacher so this is turning into a financial disaster for me, sadly, and Im starting to panic about being able to afford my health insurance bill, already in arrears.
Im worried that going back to my GP he will think Im a hypochondriac as he already did a heap of blood tests looking for Hashimotos or thyroid issues when these symptoms first started and found nothing. He seems a bit cynical about Fibro and has suggested I just have depression. However, I am NOT imagining these symptoms and I am only starting to get depressed now my quality of life has become so compromised. The issue of MS has never come up until now, so I wondered how you go about convincing your doctor to do these tests? anyone else have any experience or knowledge about the test?
many, many thanks in advance :)
I hope you don't mind me asking a question here since something came up in my NZ Fibro support group after one of the members suggested I get tested for MS.This is something I have never even considered before.
Up until a recently I have been doing pretty well, managing to teach part time and have very active weekends, a lot of travel, walking, even some cycling and helping my partner with his business. Symptoms have been pretty stable and manageable and I felt hopeful. However some new and mysterious symptoms appeared in the last 2-3 months which have left me feeling anxious and puzzled as to whats going on.
It started off with blurry vision, general weakness and then dizzy spells. At the same time recurring cystitis and over-sensitive bladder, getting up at night maybe 4 times for toilet visits (never had any bladder issues previously). Dizzy spells and balance got so bad I had to cancel my classes regularly and GP thought I may have Labrynthitis (temporary ear infection) as I also had Tinnitus and some vertigo attacks. Have seen an ENT specialist three times now and he put me on short dose of Prednisone and prescribed drugs and supplements for the nervous system.. He says there is no sign of infection in my ears but something is not right, not sure what.
Now the scary bit is that at the same time as all of this my legs have stopped working properly and have gone all weak and uncoordinated. Alongside the balance issues its meant being pretty much housebound over his hot summer as I have no car and we live on a steep hill, so getting around has been difficult. Some days Ive had to hold onto my partner to be able to walk home as the balance and weakness have got so bad.
Now, my legs have always been the part of me that worked the best! even when Ive had nasty fibro symptoms, neck injury leaving my arms weak, my legs have managed to do their thing very well up until now. We regularly take walks of up to 3 hours at a time in the evenings and weekends and now I can barely get around. I'm also getting a lot of 'pins and needles' sensations, tingling and numbness in arms and legs, feet going dead, restless legs, etc, definitely a nerve thing and not a muscle thing. Not my usual Fibro symptoms at all.
Any suggestions or info you can give me would be welcome as I've felt tearful and hopeless lately not knowing whats happening and unable to do my normal routine activities. in addition,having crushing fatigue meaning I fall asleep twice during the day and have no energy to do anything. I am a freelance teacher so this is turning into a financial disaster for me, sadly, and Im starting to panic about being able to afford my health insurance bill, already in arrears.
Im worried that going back to my GP he will think Im a hypochondriac as he already did a heap of blood tests looking for Hashimotos or thyroid issues when these symptoms first started and found nothing. He seems a bit cynical about Fibro and has suggested I just have depression. However, I am NOT imagining these symptoms and I am only starting to get depressed now my quality of life has become so compromised. The issue of MS has never come up until now, so I wondered how you go about convincing your doctor to do these tests? anyone else have any experience or knowledge about the test?
many, many thanks in advance :)
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
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Well..my thyroid might be a problem. I have a high TSH but normal T4. TSH increases when your thyroid isn't producing enough thyroid hormones...if only the TSH is high, it could be early or subclinical. Will wait and see if they want to do anything about that or just recheck it at some point. Either it'll even out or my T4 will drop. Meanwhile it's hot and I'm working with Karen, and I have no...
You may need to see a Neurologist instead of a GP.
You are not a hypochondriac. You need to insist that these new symptoms need attention. Would your partner's with you to an appointment to further validate your situation?
Please get an appointment made. You deserve a better quality of life. Take care.
Ive been sent to neurologists before with the nerve problems in my arms and Ive had twice yearly MRI's to show that the disc damage in my neck is causing pressure on the nerves in my arms and hands.
However, its the first time Ive had problems with my legs being weak, or having balance issues or constant bladder infections, someone else mentioned the possibility of MS and when I read the symptom list they matched exactly. I guess I want to know how to ask for the testing if they categorise these new symptoms as 'just another Fibro/anxiety/depression issue' and do nothing. Thanks again for your support :)
It's difficult to have a doctor treat you as if you are a hypochondriac, and it is amazing how often that happens, but if you are sick you just need to try not to let it bother you. Maybe your partner can come with you to the doctor to back you up.
I've got an appointment with a " pain specialist" in 3 weeks, he sounds fairly sane and I hope he can help me or at least point me in the right direction. thanks again :)
By the way, I just ran into an article on MS and it said the lumbar puncture isn't used as much anymore. The MRI is more important.
So your neuro just yelled at you with out doing any tests. I thought doctors in the US were bad!
I hope your pain doctor can point you in the right direction, but I'd ask about Hughes, too, since Dr. Hughes believes that Hughes disease can be mistaken for both fibro and MS. Also, Hughes is easier to treat and not as dire if treated, so I hope for the best explanation.
I also think its time to find a new neurologist too - thanks again :)
http://www.hughes-syndrome.org/
Also, 3-hour walks make fm worse, esp. if hills or uneven ground. You really,need to pace yourself, & not overdo any activity. Or you can feel it 1, 2, or, even, 3 days later. No more than, 10- 20 minutes, walking without a rest break Physiotherapist's say for fm people, as, the muscles, tendon, & ligaments are affected by fm people.
XXOO's
Best of, good luck for you, in your search for a diagnosis, & answers, & lots of prayers for you!