seeking support

[izzybelle]

Hi there.I am here mainly to share and seek support.
Even the most well meaning relatives and friends just don't seem to grasp the seriousness of fibro or how it effects our daily lives.

I have undergone several blood tests,emg,Mri,catscans,a spinal tap etc...
Have been examined by neuros,neurosurgeons,orthpedics,a pain clinic and 3yrs by a MS specialist.Finally was referred to a rhemy.

Finally after years of possible MS the rheumy was able to determine my diagnoses within weeks.Fibro,ddd with several herniations and some compression,knee athrtitis and then I tested positive for the Hlab27 blood test.
Hlab is a genetic marker for certain types of diseases.Not all people that test positive will be effected,but most who are in fact effected do test positive.
After taking xrays of my pelvic joints it was explained that I have Anklosing Spondlylitis as well.
No...not great news.But it was a relief to finally have answers!!!

Now it is a matter of discovering which meds will help me.What do you take and what have you tried?Thanks for sharing.IZ

[Linda25]

Welcome IZ!

I suggest that you read thru some of the posts on here already to see what some people are taking for problems with sleep

I was DX in 91, I take lots of meds because I also get migraines, and have depression and PTSD

I think the most helpful for the fibro is Magnesium Malate and calcium with vit. D and B6 and a very healthy diet.

Also exercise that you can tolerate - on a daily basis - is crucial, even though most of usually DON't feel like exercising:rolleyes:

Give up smoking if you do, it interferes with your bodies use of oxygen and you need to be as healthy as possible to feel well. Deep breathing exercises are calming and help get more O2 to your body and brain.

I get a lot of body and muscle pain, here are meds that I'm currently using that USUALLY (but don't always) help:
Zanaflex - at bedtime, for migraine prevention and a muscle relaxant
Soma - once per day (can be addictive, so doctor limits this one)
Parafon Forte - up to 3 times per day
Tylenol with Cod #3 - up to twice per day, but not that often, use it more for migraines than for fibro pain

Some kind of antidepressant will be very helpful, but everyone is different in what is helpful. Right now I take Wellbutrin and Celexa - I'm also taking it for depression.

i have a tens unit that I use on spasms sometimes

Physical therapy is wonderful if you can find a good PT who will also teach you how to do exercises at home and use tools such as a physio roller to stretch out your spine (I don't know if this is contraindicated with your A.S.)

Heat and ice, alternating, on the really sore spots is helpful

try to keep a regular schedule with as much sleep as you need - but don't spend all your time in bed - you HAVE to force yourself to at least get out and go for a couple brief walks per day. staying in bed all the time will only make you worse (I know from experience) Gentle stretching, a couple times per day is very good

The bit about family and friends not understanding and discounting is VERY painful - I hate it. Try to surround yourself with people who DO understand. Sometimes it's helpful if you can get family members to go with you to a doctor's appointment and have him/her give some factual info. Also, there are some very good pamphlets from the Arthritis foundation that you can give to people.

good luck and I hope you come back often

Linda25

[ptlover]

Hi linda, it seems like you've come to the right place for support and understanding! I've been diagnosed a few years ago and took all the meds precribed, antidepressants, painkillers, even meds for epilepsy but none helped (that"s me), had all the side effects and no improvement, unfortunately, and also no understanding from relatives and family and even doctors here in France. So I tried several things like acupuncture, light exercize, homeopathy and a lot of optimism and it seems to work. Also do an exercize program in the water with a PT , good for the muscles and not too hard on them. I get worse everytime I stress, so it's important to remain as calm as possible! From my experience it is mandatory to keep moving even if it hurts cause not moving makes the pain worse and you get into a vicious circle. I find the lack of understanding and support from husband and family worse than the pain, but it's probably my fault because until now i lived in total denial, refusing to admit my new limits. Listen to your body and do what it tells you, rest or move according to what you can. This is my small contribution. hang in there, good luck and stay in touch with people who understand, it's vital!
Pt