RSD/Fibromyalgia and more

[miepie]

I have Reflex Sympathetic Dystrophy, RSD, Fibromyalgia and a few other problems, and it has made me bedridden and severely disabled. It's a very painful disease and I take a ton of meds to get through the day, including a morphine patch..... that all still isn't enough to get me painfree..... I guess that will never happen....... Whenever I go out of the house, I have to pay for that the next day, so we try to limit that as much as possible.... my husband takes care of me with a lot of love, while he himself has psoriatic arthritis...... but we're still very happy together and try to make something out of life, with God's Help!

Love you all,
Mieke

 

[LuvTeal]

Hi Mieke,

Have not these doctors tested you for Ménière’s disease? It usually
involves a combination of these symptoms:

Dizziness or vertigo, an extreme dizziness that makes you unable to
stand or sit up, often with nausea and vomiting
Ringing or roaring in the ear (tinnitus)
Hearing loss
A feeling of pressure in the ear
Symptoms are often unpredictable, which can make it difficult to live
a normal life and perform daily activities.

From medtronicdotcom

I hope you find the answer.

LuvTeal

 

[miepie]

Hi,

I haven't been tested for that, as my RSD and Fibro are diagnoses determined by doctors...... and I don't have any hearing/ear problems......
My other problems consist of missing a kneecap due to chosing a wrong surgery (not my fault), chronic tenniselbows (both the leg and arms have braces on it at night and part of the daytime) and no feeling in my bladder, so I have a cathether through my belly and in spite of that I am still wet at times, very embarrassing when it happens in the supermarket.......
Furthermore I deal with side effects from the morphine patch I have and other meds, but I can't stop taking them, I'll have even more trouble then.......

Anyway, thanks for the advice!

Love you,
Mieke

 

[LuvTeal]

Hi Mieke,

My apologies. I was exceedingly tired, as I'm sure you are. I must have confused you with someone else that was complaining about dizziness and
their ears. I had to register before I posted, and returned to you initially because we walk in the same shoes. I don't have or even know what
Reflex Sympathetic Dystrophy is. But I too, am disabled, housebound and mostly bedridden from ME with FMS, Myalfacial Pain Syndrome, congestive
heart failure.

I'd prefer to meet you under more favorable circumstances, but these will
have to do. Nice to meet you. Have a slightly better day.

Love,

LuvTeal

 

[miepie]

It's ok..... I understand.....
I am often very tired myself.....

RSD is one of the most painful diseases there is and I have it fullbody......
I have a severe case of Fibromyalgia too....... and some more health trouble.....

I'd like to know more of your diseases too..... maybe you have a webpage where I can read more?

I like making cards on my bed....... They are prayercards, I pray over the person while making them...... it's really nice to do....... they are to encourage people and for celebration..... I love making cards for children......

It's very nice to meet you too! I hope you're having a great day too!

Love you,
Mieke

 

[ScottsWife]

I have FMS. I've been dealing with a brutal battle of fatigue and fogginess this week. My housework is behind, and I'm lucky that I have been able to give my 3 year old fun days...in the house, in my pajamas.....tonight was the first time I was able to shave my legs in a few days....and wash my hair. my neck is stiff, my jaw hurts, my body feels like its been hit with a mack truck, and i could not sleep if i tried. I have to take trazadone every night to sleep. I'm also on 60 mg's of cymbalta...i need to up the dose, but it makes me way to jittery and makes my heart rate go sky high (even though I already have sinus tachycardia).....the trazadone helps level it out. I also take xanax for anxiety...which i'm out of...and i take tramadol for pain. i'm 32 years old and function like i'm 80. it's sad. At least I can still do artwork...from my recliner lol.

If I do anything at all that is physical, it takes me days to recover.......and with that being said, I just realized why I've felt like this the past three days.... last saturday, I went hiking...and it was a strenuous event...i almost did not make it through the hike. I thought they were going to have to carry me on a stretcher thru the woods. I was sore sunday-tuesday....then tuesday - now I have been severely fatigued.

I'm not really a complainer, or depressed, but this is enough to turn anyone like that.

I seen LuvTeal on another thread on here, and she mentioned M.E. I have never heard of it, but from what I read, it sounds like me. If I go into the doctor and asked about it, I'm scared they will treat me like I'm a hypochondriac....I'm sure you two are familiar with that treatment.

Plus, I really cant afford any more doctor bills. We are only on one income... guess who cant hold down jobs??? you got it....its MEEEEEE. Imagine that. They wanted me to be on Neurontin, but I cant afford even the generic. I wish they would put me back on Amitryptaline. It's cheap and it helped...a little.

Chat with you ladies later. *gentle hugs*

 

[miepie]

Hello Scottswife! Welcome to this thread!

I have FMS as well..... and some symptoms of FMS and RSD are the same and aggrevate each other, like tiredness....... which gives me a double portion of it, which explains why I feel so very tired......... and why no supplements help me snap out of it........ sometimes I spend my days wanting to make cards, but being not able to do it, and those days happen often lately...... and I dislike those days a lot....... mostly I am in braces the whole day and then in the evening I put them off and try to find some distraction online in my forums (I'm a mod on another forum) and do some Biblestudy.......
ME & FMS partly have the same symptoms........ you don't have ME as much as someone who has "just" ME, but you do have symptoms like that..... it's usually where the exhaustion comes from......
I have payback times too with my dystrophy..... if I sit too long in my wheelchair, I usually am exhausted for a few days, or in a lot more pain than usual....... and can't get anything done that I'd like to do from my bed.......
I'm on a special diet since September last year, and it made me lose some weight but it doesn't make me feel better, but my husband does, so we stay on it....... one of the main things is to avoid sugar..... natural fruitsugar is ok, but not plain sugar...... and that is in a LOT of things!

Anyway, I hope you 2 ladies have a good day today!

Love you both,
Mieke

PS I am on Neurontin in a high dose....... it helped me greatly in the beginning but that only lasted a few months and now I feel it doesn't help much anymore but I still need to take it........

 

[ScottsWife]

Today has been much better for me. I woke up feeling better and i got some housework done, but I got carried away and did too much too fast, and then the rest of the day I was stuck in the recliner. bored, but exhausted. my mom wanted my daughter for the weekend. she lives far and when she gets her, its normally for the weekend. So, I'm going to spend it catching up on rest, housework, and some of my art projects. I'm working on a portrait drawing of my friend's 2 boys. art is a nice distraction. i'm sure you can relate to that! but, sometimes i have the desire, but no motivation...

 

[LuvTeal]

Hi Mieke and Scottswife,

Well, this is the way it may be with me. I'm confused and very forgetful
now, and too distracted to recall what I've done. Once I get in a pattern,
I'm more likely to recall what I've done.

Oh, BTW, I'm a crazy cat lady, too. I have four females here, and some online.

I looked up RSD twice, falling asleep the first time, and can see there are similar symptoms to ME, but ME patients don't have so much skin involvement, except for purple elbows. Except for touch sensitivity, all our problems are under our skin, the muscles, trigger points and tissues. I also have Myofacial Pain Syndrome (MPS) and a zillion other things. Your pain sounds somewhat worse, but then I'm so drugged, how would I know?

The main reason that I cannot do projects sitting is the Orthostatic Intolerance (OI), and we have a "post-exertional relapse", but flu-like,
feeling the day after, and every morning as if I were hit by a mack truck.

I'm up early today because I have sleep-phase delay which causes a
reversal in the circadian cycle, so that I'm nocturnal. Yesterday, I couldn't stay awake until after 6 p.m. and was reclining all night, and still don't feel sleepy despite the meds, so drank some coffee and am going to try to stay awake all today. I hope! The nights I go without sleep are usually my best
days, despite reclining most of the time.

You probably already know, Mieke, that Paula Abdul has been dx'd with RSD.

"American Idol judge and celebrity Paula Abdul announced that following
a 25 year battle with chronic pain, precipitated by a cheerleading accident when she was 17 years old, she has been diagnosed with RSD."

Among other pain and inflammation meds that I take, Neurontin really helps.
How many mgs. are you taking, Mieke. I take 300 3X/day.

The governments have literally covered up that they have an epidemic, otherwise endemic, on their hands. They blamed it on the patient, calling
it Chronic Fatigue Syndrome, (CFS), then (Chronic Fatigue Immune Dysfunction Syndrome), and now Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome (ME/CFS), and sent patients to psychiatrists to cover
the symptoms instead of researching to figure out what the disease is and
to find a cure for it! They did the same with MS, Diabetes and Parkinson's, for they didn't know what to do with those patients initially, either.

They could have named any serious chronic or incurable disease CFS or
done this: Cancer/CFS, HD/CFS, RSD/CFS, and so on!

As regards M.E. sites, that I've had to fudge with for this post to be
accepted since I've not yet posted fifty posts, try to deduce them,
spell them correctly, and gougle them.

Simple - The Humm-in-byrds Phound-a-tion for me.

www dot hf**me bot org / mesymptoms bot htm

me simptoms - The Humin byrds' Found-a-cion for me.

Technical - The Niteingale Resrch Found-a-cion:

myyaalgic=encefalomyeyelitis bot kom

The=Niteingaale=Def. of m.e. by Doctor Byrn M Hide

{{{Hugs, LuvTeal}}}

Hello Scottswife! Welcome to this thread!

I have FMS as well..... and some symptoms of FMS and RSD are the same
and aggrevate each other, like tiredness....... which gives me a double
portion of it, explains why I feel so very tired......... and why no supplements help me snap out of it........ sometimes I spend my days
wanting to make cards, but being not able to do it, and those days happen often lately..... mostly I am in braces the whole day .... evening I put them off and try to find some distraction online in my forums (I'm a mod on
another forum) and do some Biblestudy....... ME & FMS partly have the
same symptoms........ you don't have ME as much as someone who has
"just" ME, but you do have symptoms like that..... it's usually where the exhaustion comes from...... I have payback times too with my dystrophy.....
if I sit too long in my wheelchair, I usually am exhausted for a few days, or
in a lot more pain than usual....... and can't get anything done that
I'm on a special diet ...lose some weight....avoid sugar.....

Anyway, I hope you 2 ladies have a good day today!

Love you both,
Mieke

PS I am on Neurontin in a high dose....... it helped me greatly in the beginning but that only lasted a few months and now I feel it doesn't help much anymore but I still need to take it........

 

[LuvTeal]

Aren't -the- -hummingbirds and nightingales- wonderful sights to behold? They each
have a solid historical -foundation- for you and -me-. My friend, a -physician-, has
two little ones named -Byron- of one species and another little one named -Hyde- in
an aviary. These are wonderful critters to read of. Of course, my disease is -me-.
Please connect the words and search.

LuvTeal

 

[miepie]

Hi LuvTeal,

I am familiar with the disease ME, and I am sorry you are suffering so much..... I have part of that disease too with my fibromyalgia.....
I take 3x 400 mg Neurontin a day.... with a lot of other meds every hour of the day since 10:00 AM till 8:00 PM....... so that's quite a lot..... and still my pain isn't away...... feel horrible tonight.......

I hope you will feel better soon!

Love you,
Mieke