Fibromyalgia questions

hyacinth003 · ‎03-12-2010

My daughter in her 20's has just been given this diagnosis.

I have read the diagnostic criteria, and have a question. As an RN, I know things don't always fit perfectly. However, a couple are bothering me.

She doesn't have pain ABOVE the waist. And she has a weakness or sometimes unsteadiness in her legs. She has been worked up for neurological issues and nothing found.

She does have extreme fatigue, headaches, difficulty sleeping, now depression, and significant pain in her legs. She has developed trouble driving from pain. It's hard for her to walk up stairs.

She has just started to take Cymbalta. Does anyone know of symptoms like this?

Hyacinth

ANewHue · ‎11-21-2011

hi, first let me say I'm sorry your daughter was given this diagnosis. I was given the same fate some 14 years ago but now know I suffered with various symptoms three years before. Mine started in my legs as well. After many different doctors and tests they originally came up with a torn meniscus diagnosis. I now know that this symptom is also one of the first symptoms of MS, which I learned several years ago but none of the doctors even mentioned that. In the beginning I also suffered with the most violent migraines I ever experienced. I suffered with them every other day for well over a year. Fibro symptoms differ from each individual. Some can't tolerate heat some can't tolerate cold,A I belong in the later group. You have 16 tender points some of which are located in the lower back. I also cannot drive much because of my leg, with steady use it becomes weak and I lose feeling at times. I know it a very difficult disease but the best advice I can give is to encourage your daughter to exercise when she is well enough to do so. I always worked out prior to all this. I really push myself many days to do so because it actually helps. Some days that's all I can do is workout but luckily my family understands how important it is for my well being. It will als help with depression. It will make her stronger for when she "flares" as well. my experience has been that when you flare there is very little you can do except ride it out. I was told by a top neurologist that none of the medications work. My pain was so extreme I was finally put on a narcotic but luckily I never had a problem with addiction. It very hard but your daughter will need support from you and those around her. It's very hard and we don't want to live like this but all we can do is try our best. I wish you well, it's a challenge.

Toppers3 · ‎10-25-2016

@hyacinth003 wrote:
My daughter in her 20's has just been given this diagnosis.

I have read the diagnostic criteria, and have a question. As an RN, I know things don't always fit perfectly. However, a couple are bothering me.

She doesn't have pain ABOVE the waist. And she has a weakness or sometimes unsteadiness in her legs. She has been worked up for neurological issues and nothing found.

She does have extreme fatigue, headaches, difficulty sleeping, now depression, and significant pain in her legs. She has developed trouble driving from pain. It's hard for her to walk up stairs.

She has just started to take Cymbalta. Does anyone know of symptoms like this?

Hyacinth

Hi @hyacinth003,

As ANewHue said in her post, Fibro. can be different for everyone.

The pain can also present differently in everyone, too. Some can have it/feel it more intensly than others, where they literally can't hardly get out of bed/can barely function.

I know that after I am more active, I definitely feel worse.

I have pain all over my body. For me, I feel achy deep in my muscles.

The best way to describe it is like I have the kind of ache that comes with the flu, but I feel like that constantly, all of the time.

Sometimes I think that it can also be diagnosed with other bodily markers too. That's how it was in my case.

My doctor consulted with a colleague of his that I had seen, and they discussed other medical conditions that I already had, and that helped them to determine that I had Fibro.

For example, I also had bladder inflammation and IBS, along with other chronic inflammatory conditions, too.

My heart goes out to your daughter, and to you and your family, hyacinth, as I have been reading your posts about what everyone has been going through.

I hope that she can get some relief. ((Hugs)) to both of you.

violann · ‎03-10-2010

@ANewHue- Hi, and hello to all who have been diagnosed. I was diagnosed by a firmly traditional internist by having 17 of 18 "points", but that may have changed since I was diagnosed.

If you Google you can find the points shown on a body model. Before I was formally diagnosed, anyone or anything touching me anywhere near those areas caused me discomfort.

I consider myself very lucky, because after I realized what was happening to me and retiring from my profession, I rarely experienced flares, or most of the other symptoms I had been troubled by previously.

At the time I was a very poor sleeper, and I figured out some ways to sleep better, and I was also depressed, not so easy to solve.

When I have pain, it is in my shins, tops of my thighs, and tops of forearms. It is a burning sensation, or sometimes aching. I can usually manage with OTC analgesics, and I have fairly decent pain tolerance AND I am super aggressive about doing everything I can to stay as healthy as possible.

DianeJ2 · ‎08-07-2015

Yes, definitely fibromyalgia can affect just one area or overall...I have had chronic late Lyme disease and fibro since my early 20's (48 now). interestingly, my Lyme disease symptoms started like your daughter's - weakness in my left leg, sometimes both, which would go numb..driving became an issue too...along with migraines. The only thing I can say is first rule out Lyme if they haven't already, and find a great doctor who knows and more importantly understands the unpredictability of fibro. It can be draining as even the temperature changes can throw you into a flare! Thats depressing having to adapt to a new "normal" and i bet shes beyond fatigued as well! so sorry! A wonderful support system is key and she has that with you ☺

Spoiler

...fascia stretch therapieswhether Tai Chi, classical stretch, , massage can do wonders if her doctor ok'so them. vitamin d3 has also been a tremendous help with my fibro symptoms like joint pain&exhaustion. Sending love&light to her!