i injured my right leg a while ago and it was on the road to recovery :) but as you may know my left leg was badly injured and i have just got the cast off it. and ...
I've been "sick" since 2010, I've been passed around by doctors with no diagnosis yet. I can't work, but also can't get disability because I have no diagnosis.
Hi Joycelyn, I know I'm only young, but I have just watched your video and
read through your symptoms and some of them sound similar, if not the same
to mine, and I have had diagnosis for mine.
First of all have they ever talked about the possibility of you having a
type of chronic pain syndrome? 4 years ago when I was twelve I developed
severe headpain over night that was thought to be a brain tumor, I then had
an MRI scan where they then mis-diagnosed meningitis on the brain, it turns
out it wasn't that but was instead chronic pain syndrome. The chronic pain
syndrome spreads into my spine, hips and legs aswell, and causes horrid
tingling and swelling in my ankles and knees, aswell as tingling and tight
uncontrollable clenching of my draw. This also causes sever double vision,
and blurriness of my eyes. One of my medications that I take and find helps
is amitriptyline (its used to treat things like depression, longterm pain
and arthritis). At first it caused me to have nausea and a small amount of
sickness however within a week or two this passed, and it actually helps!
It doesn't take the pain away but it does make it more tolerable by taking
the edge off. Also I find that another tablet called Pregabalin helps in a
simular way.
Secondly for your migraines that you mentioned in the information down
below, and the jaw clenching and tingling, it might be worth looking into a
headache called nummular headache. I have this in a severe form and tried
continuous DHE infusions for, but unfortunately they didn't work. The
nummular headache can also cause issues with vision and mobility too. Its a
difficult diagnosis to get as not many people have heard of it and alot of
doctors don't recognise it, but it may be worth looking into.
Thirdly, have they mentioned the possibility of you having Myalgic
Encephalomyelitis (M.E)? This is a neurological disorder which isn't found
on any type of scan but is diagnosed by symptoms. It can cause problems
with your heart, digestion, nervous system, mobility, vision, memory,
hearing, pain, exhaustion and thats inly to name a few!. There are multiple
symptoms that come with the diagnosis, but each person gets them
differently.
Also have they mentioned chronic fatigue or maybe an iron difficency? Again
these can also cause simular symptoms.
Regarding mobility and exhaustion, have your doctors mentioned getting you
fitted for a wheelchair? It was decided that this would benefit me, and
although I was extremely hesitant, I have found that its good as I can now
go to college, and I can go out with my family. I also have alot of other
health issues that influenced, my doctors towards this, but I thought it
might be an idea even if you were just to use it occasionally.
How is your nutrition? I am very fatigued and slightly malnourished so I
have to have nutritional help in the way of formulas. I cant mannage to eat
much due to my stomach issues and general exhaustion itself. Even if you
had some supplement shakes to give you more energy, vitamins, minerals, and
proteins, could help to improve your energy, even if just by a little.
I also have Melatonin tablets that I take at night which help me sleep at
night as I struggle with sleep due to the amount of pain. I don't know if
you suffer with sleep or not but I thought that might be helpful if your
pain is keeping you up at night. Also have you considered having
counselling, this might help you to cope with living with this horrid
illness and symptoms. I'm not saying it will help the physical pain that
your experiencing, but sometimes talking to someone and sharing your
opintion, with someone who you don't know can help you deal with it
emotionally, as the pain is quite traumatic.
In NO way am I a medical expert or doctor, and might be completely wrong,
but I just wanted tobtry and give some advice or help, as I know how hard
this battle can be :) xx You are one very brave lady x
Also for your clenching of the jaw, you could ask your dentist about a grind guard. Its a plastic plate that hooks around your teeth, with a small metal wire, it's like a retainer. I clench my jaw without being able to realise or stop it. I put mine in at night and take it out in the morning. I find that it helps to take away some of the pressure that builds up in my jaw.I have severe memory loss and short term memory,and so far we have been able to help this, however you may find that some memory games may help you. For example, trying to remember a small series of numbers and seeing if you have memorozed them with out having to look by the end of the week. I know it sounds silly but it helps some people.Also from what I understand you don't get on with physiotherapy/physical activity (I dont either and can only walk very few steps unaided, I have othe issues with my legs). Have you heard or tried Hydrotherapy? Its classes as physio but involves very little movement and is in a small heated pool that they have in hospitals. For me, they get me in the water, and lay me on floats and move my legs different ways, as well as other things, this helps to build the muscles up and causes less stress, pain and uses less energy than physiotherapy. There are also multiple other things in the pool that they can help you with aswell as coordination too, but they do it differently for each person. Also physiotherapists can do types of massages, and can work on your muscles to releive tension and any tigtness from joints, this may help your pain, also physio tape can be helpful too.Sorry for such the long comment but I just thought that my experience could be helpful for you! x
I'm sorry for your situation, I am currently working on getting disability
and it is tough even with all of my documented conditions and surgeries.
(NOT impossible, I'm just saying they definitely don't make it easy) You
might want to check out Vocational Rehabilitation. They are a program that
helps people with disabilities find a job and make sure they have all of
the things they need (they currently are putting me through college and
paid for my laptop, recliner, desk etc) I know they have it in Florida, but
it might be worth checking out different programs in your area. Keep
fighting and good luck!
Well at least you aren't forced to look for work. I understand the depression that comes with sitting around all day. It turns home into a kind of prison.
+Chronically Mo I did try the vocational rehabilitation when I started college but they said I did not qualify. Since I can not work at the moment I had to go on welfare. They usually make you look for work but my doctors said I could not do that much activity. Sitting around and doing nothing can make me depressed so my doctors agreed I could 3 hours of activity a day so I am a volunteer through welfare and they pay for my gas and books for college. I also get help through the disabled student program at school.
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