Struggling to wait for answers

Just a girl

New member
Joined
Oct 12, 2020
Messages
3
Reason
DX CFS
Diagnosis
05/2018
Country
NZ
State
NZ
So far the first specialist I saw said it's probably CFS, then rheumatologist said possibly Fibromyalgia but neither gave me formal diagnoses. Recently I've gotten alot worse and am now waiting to see a neurologist to see if MS but it's so hard waiting the 8 weeks as the pain is so bad but until they figure out a formal diagnosis I end up without any way to manage symptoms. It's also scary because so many doctors are so dismissive and I'm worried they will not do enough tests though I want to atleast rule it out. I feel kinda silly being so upset since I atleast have an appointment but I just stress about what the doctor will say or if they can even help me. I have abnormal blood tests but even those were written off as being normal for me since they have been that way for years, though I put it down to the fact my health is unmanaged due to lack of treatment.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
796
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Just A Girl,

Try not to stress about what the doctor is going to say. Your doing that is guaranteed to make whatever you are feeling physically get worse. Relax. Even if you have FM it is not a death sentence.
I strongly suggest you read the post below, as I wrote it to give everyone the best advice I have currently for managing FM, and it would be good advice for managing other things too, I think (although I can't say for sure, since I only have FM)

Try implementing some of these things now, and most especially stay calm by whatever means you can so you don't contribute to your problems. These things are the best treatment that you can have, far better than the drugs that a doctor will give you, which only mask the symptoms and don't affect the causes at all. And best of all, you don't have to wait to do these things - they are under your own control.
Best of luck to you!
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
The waiting is the hardest part ...
 

JayCS

Distinguished member
Joined
Sep 5, 2020
Messages
146
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Whatever it is, pinpointing your symptoms with the help of PTs and developing your own ideas might help. You might like to share them and ask for our ideas...?
 

Just a girl

New member
Joined
Oct 12, 2020
Messages
3
Reason
DX CFS
Diagnosis
05/2018
Country
NZ
State
NZ
Thank you for the replies. Personally I do think it is MS but the only way to really know is to have an MRI of my brain, for all I know it could be normal.
As for symptoms the main issues is cramping in my back that makes my leg go numb, this has caused my foot to catch on stuff and I end up spraining my ankle. It cramps even in the shower or cooking food. I also have intense sudden need for sleep in the middle of doing something and can sleep 14-18 hours at once and it is almost impossible to wake me up, though sometimes it can be 4 hours if I haven't done too much such as the time I was drawing and part way needed to sleep. I get quite dizzy and off balance and tend to walk into doorways as I find it hard to perceive distance around me, I have bowel issues and often bleed when I go toilet, with intense cramps and alot of bloating and gas. I get numb hands and feet, sometimes pins and needles instead. I forget things, read things wrong or mess up spelling which can be awkward as I have turned up to doctors appointments on the wrong day. My eyes are starting to get blurry more so double vision, I also have bouts of vertigo where the room is literally spinning.
I guess it's a bit hard to determine what the cause is as it could ge anything but it would be great to get your take on it if possible.
 

JayCS

Distinguished member
Joined
Sep 5, 2020
Messages
146
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
OK, I'll have my go on this... Not sure how many specialists you've tried... I've grouped vision and vertigo with dizziness etc.
cramping in back: lying down a lot more/often, with gentle but increasing back / yoga exercises 30 mins per day (3x10?), praps with the help of a good PT, , heating pads? Leg numb: one or both? neurologist? Foot catching/spraining: take care, slower, looking, groping/feeling your way.
While cooking food: Yes!, that's very hard on the back: Use a turnable adjustable bar stool? lie down every 5 mins? do back exercises before and during? Showering: Keep it shorter? Sit down? Exercises before?
Long sleep: how nice ;-).. - nah, I know, depends... Sleep lab? More disciplined wake and activity times?
Dizzy / off balance / vertigo / eyes blurry / double vision: eye specialist? neurologist?: close you eyes for a while? neurologist? Doorways: Use your hands more to guide you?
Numb hands/feet/pins/needles: Raynaud's syndrome? Neurologist? Disturbed blood flow?: Cardiologist? Angiologist? Hot / cold water alternately, regularly?
Forgetting things: Neurologist? double checking / double planning / getting someone (in the family?) to check with you.
Bowel / Bleeding: Gastroenterologist? Allergologist? IBS? Elimination diet to find out what you are intolerant too? Psyllium with only little water? Hemorrhoids? Cream?
Grouping this: A) Neurologist not just for checking MS, but sleep, dizziness, numbness in legs, hands, feet, forgetting things. B) Orthopedist for checking back, PT, e.g. osteopathy for both. C) bowel/bleeding: Gastroenterologist, then allergologist, but trying diets like gluten-free, vegan, or a radical elimination diet (nothing irritating).
Parallel to getting things officially checked, to rule out the "dangerous" things, you can do a lot on each of these yourself, as sunkacola says and describes in her advice!
 

Just a girl

New member
Joined
Oct 12, 2020
Messages
3
Reason
DX CFS
Diagnosis
05/2018
Country
NZ
State
NZ
Thanks for the detailed reply, I haven't seen many of those specialists, so far internal medicine specialist, endocrinology, rheumatology, while a hematologist reviewed my blood tests. I've had vitamin d deficiency causing hyperparathyroidism and a folate deficiency caused by omeprazole. I am waiting to see a neurologist currently.
I do try to implement a few things on the list such as keeping reminders on my phone that I write immediately whenever it's something I need to remember and triple checking everything on the day.
I don't think it is Raynauds syndrome as I don't get discoloration or different temperatures, often it is just the ring and pinky fingers.
I've been stretching more before doing things and it's helped a little bit and trying to not bend as much in shower.
For sleeping the episodes aren't exactly related to normal sleep, in general I can sleep average but if I exert myself it's like an overwhelming need to sleep and I can't keep my eyes open so perhaps I do need to see a sleep therapist.
My age means doctors don't want to send me to Gastrenology and it's mainly related to gluten which I need to get on top of.
I guess it's just waiting to see what the neurologist says but will try implement some of those suggestions!
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
122
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I have basically all of your symptoms, too, or have dealt with them over time. Sometimes I think we have to choose just one or two things to focus on, because if we try to fix everything at once it's just too much.

As for back spasms the PT I am working with insists that they are due to an over arched back and she has been working with me to slowly correct this posture but it's a slow process. Weekly visits and daily exercises to offset a lifetime of habit and various injuries and surgeries that have occurred over time. Building this core strength and training my body into a posture that alleviates some of my symptoms would be great. She also thinks my low back pain is related to this as well and some of the pins and needles I get in both arms and legs due to compression to the back from over arching. I never thought there was anything wrong my my posture, I thought it was just normal, but I realize there is a lot going on in my body that I am out of touch with. And another part of the work we are doing is to help me get in touch with the subtle signals from my body which also involves turning down the volume on my pain messages.

I usually recommend working on sleep, exercise and meditation to start, and then see what else rises to the top and needs to be addressed.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
796
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
My age means doctors don't want to send me to Gastrenology and it's mainly related to gluten which I need to get on top of.
Cut out all gluten immediately. Don't wait and don't "cheat". If you have gluten intolerance, you will be delighted with how much better you feel if you do this.

It's easier than it ever has been to eat without eating gluten. There's gluten free bread, pasts, and so on. You have to read labels very carefully, though, because wheat is in a lot of things you might not think of....like soy sauce, for instance.

After a while you adapt and don't miss gluten things any more. Especially when you know it will make you feel bad to eat it.
 
Top