Can We Compare Symptoms

[BrokenBladder]

I have FMS and just wondered what symptoms everyone else has. Needless to say I'm tired all of the time, can't sleep, my hearing is getting worse, stuffy nose, aches and pains in all kinds of places, pins and needles in my legs and arms, memory loss, and the list goes on.:rolleyes:
I just thought it would be interesting to compare notes and see what everyone else is feeling.;) Maybe it would help some people to not feel so alone in this disease.:)

[Tootsie]

It is really difficult for me to focus on my symptoms. I have had them for so very long, (almost 50 years,) that they have simply become part of me.

The tiredness, I deal with, by getting adequate sleep. When overwhelmed by it, I simply find things that need doing that do not involve a great deal of energy output. I have learned to procrastinate!

The aching is less, as long as I swim my 32 lengths of the pool, three times a week. After a hot shower, nothing hurts, I am pleasantly tired, and sleep well on those nights.

I avoid negative people, refuse invitations that involve more energy than I am willling to contribute, plan and organize my activities so that I do not stress myself and others.

Long, long ago, I stopped expecting the medical profession to resolve my problems. Medication does not work for me, and simply adds financial expense and frustration to the situation. I call my doctor, when, whatever I have done, to deal with a symptom, has not helped, after a week or so, of trying.

This condition, (I REFUSE to call it a disease) can be lived with, managed and controlled to some degree. The frustrating part, is that not every one is helped by the same adjustments of life style, specific medications or routines. The challenge, is to find the ones that work for you. Courage! Cheerio.

[Bluey]

Wow. 50 years.
That's a long time.
But when I think of it, I'll probably have that long to deal with it myself.:eek:
And then I'm gone.
And when I go, God had better have some kindda explanation prepared. :rolleyes:

[BrokenBladder]

but it seems like you have a great attitude about it. May I ask you if your symptoms have gotten worse or have they stayed the same. I guess I just have to wonder how much the FMS will progress.:eek:
I have other things wrong with me as well, but it seems to me that the FMS has gotten worse over the last 8-12 months. Thanks guys for sharing your stories.;)

[Tootsie]

Symptoms vary, can come and go but seem to come more easily than they GO!

I hate being a better indicator of a change in the weather than the weather reporter on TV, but that does seem to affect me, especially when it becomes colder. Fortunately, before I developed fibromyalgia, my husband and I moved away from the snow and blow, where we grew up, and now live in a very moderate and pleasant climate.

Things have become a little more complicated as the arthritis that comes with aging joints, has appeared. However, the same things that help the fibro stay under some degree of control, are also the same things that keep the arthritis bearable.

You might find that as the other things that plague your health are dealt with, the fibro will subside somewhat. I only hope I live long enough to find out just what this condition is all about ! Cheerio.

[ptlover]

Hi Lisa, no you're certainly not alone to have all those symptoms! The worse for me are the constant pain that moves around in my body although my knees and ankles have been spared so far. I think Tootsie said something very important when she mentionned avoiding negative people. I deal with the pain and the condition as well as I can, some days are better than others but it does'n keep me from doing things as long as I listen to my body and don't overdo it. As far as sleep goes, I haven't been able to find a way to regulate or improve it, but in some strange way, I always feel very tired but also "speedy'...can't stay still, doctors says I produce too much adrenalin! I don't take any medication anymore, tried all kinds but they only made me a zombie and didn't relieve the pain.
The pain has become worse over the years (I'm 47) but my ability to manage it has improved, so in fact I suffer less than when I had the first symptoms that scared me so. I have a stuffy nose too, very stuffy and dry in fact, and I would say that bothers me a lot. Physio and ostheopathy do help a little bit ans mild exercizing. Unfortunately I don't have a pool, and none in my village but when I do swim, I feel a lot better. I hope this helped a bit. Hang in there, it's uncomfortable and sometimes very painful but you can live with it, stay positive, don't stress if possible! Take care
PT

[BrokenBladder]

ptlover, thanks for sharing your experience. I'm 41 and as I said earlier the last year I can tell that the FMS has gotten worse. Maybe age has something to do with that.
I do try and stay away from negative people and also the ones that just don't understand (or even attempt to) what I feel like. Over the years I've found out who my true "friends" are and that in itself has been a blessing.
As far as stress goes.........well I'm working on that. I have two sons one who is 18 and one who is 16. My youngest is sick with allergies and asthma and spends alot of time at the doctor. I sure hope he is spared this pain later in his life. Take Care everyone and thank you for sharing!! I know it helped me and maybe it helped someone else too.

[kathyrooker]

Hi everybody,
I found this list of symptoms. Does anyone else have this going on, as it describes me exactly.
Blurry or double vision/ heavy, weak eyelids
weak arms, neck, face, shoulders, and legs
difficulty chewing,swallowing, talking (slurred speach), smiling
undue fatigue that worsens with activity or later in the day
symptoms come and go, sometimes for days or weeks, but seem to worsen as the day goes on
difficulty breathing, especially after activity or when lying flat
pain that seems to come from weak, tired muscles, especially neck, upper arms and shoulders
I would like to know if I am pursuing the correct doctors and diagnosis. Any input would be greatly appreciated.
Kathy from PA

[cherie4000]

Kathy,
I too was diagnosed this year after delivering my son. My symptoms include, I keep sweating, and would have cold hands and feet, muscles twitching, tingling in my back, tinning eyebrows, high Cholesterol,Swelling in hands mostly right during exercise, heightened sensitivity to odors, noise, light, change in weather, and touch,heavy and painful menstrual periods Dizziness and heavy/drooping of eye lids, Dry skin, anxiety No weight loss with diet and exercise, TMJ, also just recently diagnosed with Hashimoto's Thyroid, so some of the symptoms are because of that. The worst thing is poor sleep I wake up 3 or more times a night. I had my thyroid checked it came back normal, I had to push for more test through an endocrinologist in which I had an enlarged thyroid. I've seen 10 specialist and have given up on being normal. Would love to hear if you've gotten any help. Cherie

[ptlover]

Sweating is one of my problems too, as well as high cholesterol (I'm a skinny person on a healthy diet...always have)extreme sensitivity to bright light and noise (not smell, nose stuffed all the time), painful menstrual periods; dry skin, limit to hipothyroid and extremely poor sleep. The pain is mostly located neck/back, shoulders, arms, elbows and wrists. All the tests done (except for the cholesterol) show a healthy body (hurray) no explanation whatsoever for the pain. Even had muscles in the belly hurting so much, I had to go to ER for scan, because de GP thought there might be something bad....nope just a sore muscle!
Most days I can manage the pain and do things at my rythm and I've finally learned after a fex years to say no and not to what I'm not up to.
It takes time.....hang in there
PT

[Tootsie]

There is one more thing that I forgot to mention, that has helped me immensely. Since I have a severe curveture of my back, called scoliosis, I had gone to my internist and asked for a referral to a physical therapist. I had seen my reflection in a shop window and noticed I was swaying and swinging my one leg out when I walked. I had a spinal fusion when I was 12. No, that is not a typing error. I was twelve years old and fused with bone from my leg. (1949.)

He suggested calling one of his patients, who was a teacher of Alexander Technique. The first visit was free, as David, the teacher said that it was impossible to describe what he did. It was easier to show me. After the first session, I found that A.T. was basically posture lessons. David was very frank, in telling me that he had never worked with someone with my degree of disability and deformity, but was willing to see me and try. He reassured me, that while what he did may not be helpful, he was sure that there would be no harm.

Ten sessions later, I was delighted! I found the time with David very helpful and I faithfully did the routines that he recommended, on the floor every night. He had given me some sense of control and much of the tension, stress and pain that I felt in my upper arms and shoulders was relieved. I learned how to fix myself! I had 2 more sets of 10 sessions each before David's own significant disease claimed his life. I still practice daily, all the things he taught me, as any vacation I take from it will immediately cause contractures of specific muscles to resume. Cheerio.

[BrokenBladder]

for sharing your experiences!! I really love everyone on this board as you guys are so kind and willing to help!! Everyone please have a pain free evening!!

[ptlover]

Hi Tootsie, just wanted to say that I heard so much about the Alexander Technique that you convinced me to get moving. Found a teacher and I have my first appointment tomorrow. Thanks for the push and I'll keep you informed on how it went. Have a great day
PT

[Linda25]

ah, symptoms; what haven't I gone thru?:rolleyes:

most prominent:
Fatigue- no matter how much I sleep/exercise/eat healthy/ etc.
body pain- moves around body - neck and shoulders almost always
headaches and migraine (the migraines may be a seperate entity, I don't know)
cognitive dulling and memory problems
dry eyes
ridged and very dry fingernails
IBS (not all the time, but comes on when I'm stressed)
GERD (most of the time)
tender points - i have most of them
general lack of stamina, loss of enjoyment due to physical pain/impairments - even though I exercise quite a bit for someone my age
poor balance, fall down a lot even though I practice balance exercises


I also have depression, PTSD, Asthma and Migraines and I know there is overlap in all of these conditions, so sometimes it is difficult if not impossible to tell where one condition begins and the other ends

[Tootsie]

Alexander Technique is recognized and used more in Europe than in the US. It may be because Alexander himself was a Brit. David told me that A.T. is covered by the National Health Service in England. I don't know if that is still true.

One problem in the US, is that there is relatively little money to be had teaching A.T. Insurance companies usually do not cover the lessons like they do physical therapy appointments. Once you learn the technique, you use it by yourself, and that involves a certain amount of self disipline. So often, people will go to a professional with the attitude of, "fix me."

I was fortunate as David had arranged with an MD to order the lessons and then billed it under the physical therapy codes. That upped the cost considerably, but I didn't have to pay it. And, we wonder why everything is so expensive? Cheerio.

[aggscott]

I have had Fibro for six-seven years so far and it has had it's ups and mostly downs. I never was able to handle my pain and had to take pain meds to feel better. They help me a lot..

But so far I've had-

Pain in my neck-shoulders-spine and lower back. Pain in my hands-fingers-knees and feet.
Just your basic blah's-I also used to go and get the shots in my back and neck. I have Mofacial Pain too- They never helped me though. The last time I went I wound up getting a spinal headache from a bad shot. Something didn't close properly when he gave me shot and I had the worst headache ever. I couldn't even stand up from the pressure and pain. I had to get a blood patch to have it fixed. Needless to say I never went back after that...

Bad swelling in hands, wrists, feet and ankles. My feet swell so much that the skin in between my toes is peeling off. It hurts or burns if I touch it.

Fatigue real bad. Most days I still have to take a nap in the daytime. Only for about a half an hour but, it helps. I wake up at night and most times I have trouble getting back to sleep. Even if I sleep all night though-I still get tired.


Raynauds -
sciatica on the right side.
UTI's constantly-at least one a month.

I know I have had more than this through the years but, I just can't think today...I've been to therapy 8 times and have tried both types land and water. I've been to pain management-I've had more shots in my back and neck than I have ever had in life anywhere else...I think for while the medical system was making a mint off me!!

I remember when I was not on any pain meds my pain was a burning pain that got worse as I moved and my skin felt like it would get tighter too.Like if you tired to pinch up the skin you couldn't do it.

By the end of the day I was a mess. I remember thinking that if I had to live like this for the rest of my life it would be impossible. I couldn't even take care of my children.

Now things are better-I still have pain and fatigue but, I can deal better that I don't feel all of it. I'm currently being tested for a Connective Tissue Disease. I have a lot of signs of Lupus but, my labs keep saying no~

And I have acomplished all this by the age of 33!


Aggie::o

[MichelleC]

Well, I've been putting off replying because I just don't like to dwell on all of my symptoms. Usually, the more I think about them, the worse I feel. Like Linda, I don't know how many of these can be attributed to fibro, or if they're caused by something else.

Roughly in order of appearance:

sudden, sharp pains in leg joints, making me limp or fall
upper back pains
unstable knees
"female" trouble
GERD
stuffy nose, no allergies
chronic daily headaches
migraines
pain in lower back, right hip, and aching/pain down my leg
constantly sore feet
burning toes
tingling in limbs
numb areas of my body, from just a wrist or ankle to numbness over a large part of it
fatigue
trouble walking
pains roaming all over my body
trouble concentrating
extra heartbeat
low white blood count
costochondritis
slight TMJ trouble
fall asleep quickly, but wake up in 3+ hours
don't feel rested if I do sleep, too many dreams
constantly waking up to roll over because of pain in hips and shouders
sore hands and fingers
skin hurts to be touched
easily overwhelmed
depression

I feel like I have forgotten a few things...

Here's some (edited to add):
electric-like pains in feet
ringing in ears (thanks Nancy, I forgot that one til I read your post!)

I don't have all of these all of the time, some times are worse than others. I have been feeling much better the past month, once I started Cymbalta. I hope it keeps working.

Michelle

[Linda25]

Michelle - are you having any side effects from the Cymbalta?

[Nanna B]

I, too, have putting off replaying I think because this is all still new to me, and I am kinda in denial that my body is falling apart.

Major Fatigue
Extreme Muscle Soreness, Cramps, Spasms
Dizziness
Headaches
IBS
TMJ
Swallowing Problems
Recurring Canker Sores
Mitral Valve Prolapse
Cold hands and feet
tingling in hands, feet
temors hand, head
Concentrating, memory, speech problems
sensitive to odors and tastes
Low blood pressure
Some ringing in my ears
Nightmares

Well, today I get my full report back from my doctor.

Have a good day,
nancy

[MichelleC]

Linda, the first 3-4 days of Cymbalta (30 mgs), I felt kind of spacey & weird. Nothing really strong, I still went about my daily routine. After that it went completely away, and I feel as "normal" as I can call myself. I felt pain reduction within 2 days, which lifted my depression immensely. The painful areas it helped the most were my hands and feet. I also received a cortisone shot in my hip the day before I started Cymbalta. I think the combination of reducing the various pains helped to calm down the overall pain in my body, like a pain reduction cascading reaction.

I did happen to have headaches for a few days when I started Cymbalta, but can't be sure if that was a side effect, or from breaking my diet six ways the day of the doctor appointment. It was an hour away, my 10 year old was with me, and we went to the Olive Garden as a treat. By eating the soup, breadsticks, and little Andes mint I might have caused those headaches.... cheese, sausage, fresh bread, chocolate, onions, and the little sample of wine are all on my don't-eat list right now (as migraine triggers, for those that don't know).:o What can I say, I had a weak moment and walked right on into it.

Michelle

[Linda25]

Thanks for the reply Michelle

my hubby is having a terrible time with fatigue and fibro type symptoms as well as depression, he is on Nortryptiline, but after talking with our pharmacist today, I too am starting to think it is CAUSING more fatigue than it is worth. The pharmacist said that doxepin as a tricyclic, or Cymbalta as a new antidepressant may help.

one of the drugs suggested by his shrink was Cymbalta, I am also interested in it, though my Wellbutrin and Celexa is doing well for me depression wise (but not fibro wise)

COMPLICATED:rolleyes: :eek:

anyway, thanks for your input

love,
Linda

[Fayelle]

I think a better question for me would be what symptom have you not had....

This is why I have been discounted so many times.....

Lets see:

Fatigue
Sleep attacks
headaches
sharp pains through the head
TMJ symptoms
vision loss
vision decline
dizziness
vertigo
body aches
sharp body pains
muscles spasms
depression
anxiety
extreme cramps during menstruation
miscarriage
ear pain
tinnitus
hearing fluctuations
tremors
brain fog
IBS symptoms
strange bumps on my arms, never clears up
allergies
asthma
night time congestion (my nose is completely blocked up and my ears drain in the morning)
extreme lower back pain
extreme upper back pain
neck spasms making neck movement impossible
unexplained temperature fluctuations
burning on the outside of my ears
numbness
tingling
watering eyes
bladder incontinance
shooting chest pains
heart attack symptoms
changes in cognitive function
slow speech
confusion
weight gain and loss
itching
insomnia
hypersomnia
mood swings
sore throat
eye twitches
tics
restless leg syndrome
hair changes
sensitivities to taste, smell, touch
burning skin, much like a serious burn
low sex drive
muscle weakness
heart palpitations
rapid heart rate
slow heart rate
changing allergens, food etc....
tongue burning
sensitivities to lights, sounds etc
hypnogogic and hypnopompic hallucinations
nystagmus



I am sure I am missing some that I probably have not had in a while.....

Like I said it would be easier to ask what symptom I have not had....

I don't always have the same symptoms.....Mine are sporadic at best....The constant is overall and traveling body pains....IBS symptoms.....fatigue.....

Blah too much to think about, too many symptoms not enough time in the world to ponder them all :)

Fay

[Sydney]

Well - here goes with my symptoms. I have had FM since 1984 and worked full time with it for 20 more years. Some days I can't believe I would make it through the day. Started with facial trauma from a dental appliance - spread to head and TMJ and teeth. Then as other areas were traumatized it began to spread. Trauma from Dr. exams (one dr. pulled feet and triggered it off in feet and then another pulled thumb and triggered it off in my hand and arm). Car accidents, epidural in back caused it to spread to entire back and neck, IV in hand - now RSD in hand - also RSD in back. FM and RSD overlap. Recently spread to knees, ankles, and feet. Very painful and can hardly walk.
Also, difficulty typing as it makes my hand ache worse.
Symptoms:

PAIN PAIN PAIN-----constant - moves around from place to place but is also present in several places to make me miserable. pain FROM MY FACE TO MY FEET!

IBS

Acid Reflux

Freezing feet and hands

Burning, stinging soles of feet

Sensitive to touch - allodynia and hypralagesia

Disabled - walk from car to house

Weight Gain from drugs

Polymorphic - do not metabolize any pain meds thus always in severe pain

Rash on both arms

Sun sensitivity - burning sebnsation if only in sun a few minutes

Meralgia Paresthetica - people with FM are prone to this (so I am told)
There is a forum here for this if you'd like to check it out

Reflex Sympathtic Dystrophy - I am not sure where the FM begins and the RSD end. They overlap with symptoms.

There are more I am sure but I'm burned out now.

Be well. Best wishes to fellow sufferers

Sydney