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Fibromyalgia How bad can it get ?
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cjh1989 posted:
I've been having so many problems when it comes to my fibromyalgia

Can't sleep when I do sleep I'm so tired like I haven't slept.

I feel like I've been some sort of major injury ( ran over fell down a set of stairs etc.) Every day even barley touching or tapping causes pain that lingers after it happens Other words widespread chronic pain everyday

I can't remember any thing I forget my passwords to my online accounts ( e-mail websites turn the car off while still in drive fiancé loves that one haha ) that I've had for years

I have no attention span

Joint pain and jaw pain

Shortness of breath ( u sure if this is a symptom of fibromyalgia let me know if you know )

Balance and coordination are horrible always stumbling tripping and close falls ( is this a symptoms ? ). I'm a 22 years old male my doctors says this is rare, is this correct ? I'm on many diffent medications

Nothing is really working so far expect vicoprohen (lyrica not working) And it's not working great I just don't know what to do ? Anything to help memory ? Is poor balance a symptoms / do you have this symptoms

How bad can the memory loss problem get let me know.

Also is there any other symptoms that I should be aware of ?

Thanks.
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booch007 responded:
Welcome to this website and the fmily.

We have a few men here and our lead physician is a male and also deals with our problems. He is in the upper right corner of this page. Dr. Pellegrino. Picking on his discussions will link you to so much information he has shared with us.

Also in the resource section under Members Toolbox you will find tools we have honed to help ourselves over the years.

This is such a complex condition of chemistry that it is so hard for doctors to get it right, to get our supplements in order and brain chemistry in line.......there are many books written to help you too. I have one called a survival manual. "Fm and Chronic Myofascial Pain" by Dr Devin Starlanyl......it is my go-to book when I am not well, or something new has happened to me in symptoms. 19.99 but priceless*.

Most important for you is, you found this site. A strong group of challenged people who hold eachother up. This definitely is the most challenging thing I have had to deal with.

Having something chronic is tough, but this won't kill you (just mames your spirit)....but it definitely changes your life.

So, I am sure others will chime in here, please post often and share questions or if you find things that help you...share that too. That is how the toolbox started......I do more non medical things to help me then meds. The answers are not in a pill bottle, and always remember we are never without pain. IT is just turned down a notch to tolerate and have a life.

Take care, Nancy B
 
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JBirdFletcher responded:
Welcome!! I am glad you found us. You will find a great deal of support here. I also recomend checking out the member tool box. You will find lots of usefull information there. Also check out the resources section. It is very important that you educate yourself about Fibro.

It is also important that you find a doctor who knows how to treat fibro. When it comes to fibro there is no one set method of treating it. What works for one may not work for you. It is a trial and error process. Medications can take up to 6 weeks before you know if it will work. There are many not scrip things that work for us as well.

  • Sleep is an issue for all of us.
  • Wide spread chronic pain is the biggest complaint for us.
  • Memory problems yep you bet. Sometimes it is worse than others.
  • Attention span goes with the memor problems or Fibro fog.
  • Joint and jaw pain, fibro does not affect our joints like arthritis but it does cause joint pain. Many other conditions such as TMJ and IBS occure with fibro.
  • Balance and coordination, is also associated with fibro.
  • More women then men have fibro but, you are not alone. There are several men in our group.
  • There are several medications that are used to treat fibro it can take some time to find a combination that works for you.
  • Memory problems can get worse as your pain gets worse. Check out the members tool bag for tips to help with memory.
Again welcome to our group. If you have other questions please ask. Someone may be able to answer. Dr.P not only treats fibro pacients but has fibro himself. Know that you are not alone.
I may have dyslexia and can't spell, I may have Brain Fog and not remember who you are, I may have tremors that scare you, I may drop everything I pick up but, By ALL I do it with everything I am!!!
 
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tt58r responded:
Yes shortness of breath is definitely a symptom, as is falling. dropping things. and losing your train of thought in mid-sentence. I am sitting here with a sprained, possibly fractured ankle which is a reminder that I still can't trust my body. I've had Fm for 21 years now. It does get better, but it can also get worse for no apparent reason. Another thing to remember is that it is tempting for both you and your doctor to blame every symptom on the Fm and to overlook a potentially life threatening condition. A few years ago I was diagnosed with multiple small strokes. The neurologist said that I had to have been having them for at least 5 yrs. So now I'm wondering how many of those falls were FM and how many were strokes. Trust your gut. Keep plugging away. try alternative medicine as well as prescriptions, I like self hypnosis and melatonin. Don't do anything for too long including sitting or lying down. And when you feel really down try to find something you can do for someone else. Good luck and remember you are not alone
 
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itinamu responded:
Hi,

You just described the last 15 yrs of my life and just it got it name last year- FM. You are not alone; I know it can be scary with all symptoms happening. I don't know if it helps but I have the same symptoms- and a few more. For me just learning what I had was a huge relief and allowed me to learn what FM was and the symptoms that can come with it. This is a great place to learn and ask questions from people/drs who know what you're going through. All this below is how it has gone for me and everyone is different.
*The pain- for me getting enough sleep, even though it feels like there is never enough, helps. Also, pain meds or massage help for me. I also take a nap in the afternoon when I have my mid day slump. For me the pain never goes away but I have learned to deal with it- also my family gives me lighter hugs and that helps.
*The jaw pain- I have TMJ and my night guard helps. Also massage therapy; it's amazing the muscle groups that affect your jaw. Stress from dealing with FM doesn't help either.
*The memory issues and attention span- I joke that my brain is Swiss cheese but in reality between the fibro fog and my meds my memory is shot. I have taken to carrying a notepad with me everywhere. I also use my phone to keep notes and reminders. I also have asked friends and family not to interrupt when I'm trying to tell them something because I will forget if I get distracted.
Change is always happening and keeping a journal helps, I bring it to my dr apt so he can see how things are progressing, because I can't remember when something I want to share happenedJ
As for the passwords, I try to keep as many of them the same as I can to cut down on what I have to remember.
*Balance- talk to your dr. Personally, I have balance problems and walk with a cane and have fallen many times but I have some chronic back problems. Seeing a chiropractor and a physical therapist and learning stretching and movement techniques helped. So does Yoga, I've been in the beginning class for 6 months and still can't do everything but it makes me feel better and keeps me moving. Plus, different times of the day seem to help.
Good Luck, T
 
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Anon_50355 responded:
Hello! I know how you feel. Lyrica didn't work for me either. It made me worse by causing dizzyness. Cymbalta wasn't anygood either for the same reason. For me Savella (for pain and depression), Amitryptaline (for sleep and depresstion), and Tramadol (pain) work the best. Another symptom that is possible is restless leg syndrome. Another too look out for is Viatmin D deficiency.

Don't feel bad about leaving the keys in the car. I do it all the time. C.R.S. (Can't Remember Squat) is a big one for me also. It drives me batty that I lose my train of thought or can't come up with a simple word in the middle of a sentence.

Balance is also an issue. I have had so many near falls it isn't funny. Getting up from a seated postion is also hard. I tend to fall back into my seat. Squatting can also be a problem. Most times my husband has to help me back up. Beware of your meds. They may increase this problem - like the Cymbalta and Lyrica did for me.

Thanks to you I now kow the answer to one of my sysmtoms. Shortness of breath. I was tested for a heart condition for this, but it was fine. No one thought about my good ole FM for this.

Good Luck and remember, you're not alone.

Amie
 
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AmyPoohIL responded:
Dear CJH,

Congratulations on taking an important step towards managing your own health!

The other members have done a stellar job of answering your questions...so I am just going to give you a small piece of advice I wish someone had told me when I was first diagnosed with FMS. The advice is this:
  1. Keep a journal to track your pain and / or other symptoms - what are you feeling; what makes things worse / better; etc;
  2. Make sure you find a doctor who listens to you AND is willing to work with you to manage your health;
  3. Consider "alternative" therapies in addition to medication: For a lot of us, drugs are a reality and a necessity...However, most of us also respond to "other" help - whether it be counseling, massage, chiropractic, exercise, acupuncture, etc.
I wish you the best of luck! I was diagnosed 10 years ago at the age of 25...and, in the last ten years, science and medicine have come a long way in treating patients with FMS. This community is a great support system that didn't exist 10 years ago - I encourage you to keep reaching out to these amazing people...for help....for understanding...and for support that can only come from others who have walked in your shoes!

Smiles and hugs, peace and love,
AmyPoohIL
 
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JuliDooty1953 responded:
Hi, I was dx in 1994, suffered since 1992. Treatments for fibromyalgia have improved drastically since I was dx. You will find what is right for you. I have the same sleep problems, Ambien helps about 60% of the time. The pain, well that is an ongoing battle, but I find that stretching along with Ultram, Hydrocodone and Zoloft have been working most recently. I have never ever had a day without pain during the last 19 years, but I don't make it a priority, I am sick and tired of it, but I won't let it define me. With time I have "trained" my mind to put the pain in the background so to speak. Guess it is my own form of bio-feedback. Trying to keep busy mentally and physically as much as possible makes life better. My memory is awful but I was told that is a side effect of the many rounds of chemo I had for advanced non-Hodgkin lymphoma, I just reached the 5 year mark with my remission, it was very advanced when I was dx and the prognosis was 3 years survival max, that was in 2000. You are so young, I am a 58 year old female. Take extra care of yourself, your immune system needs extra help when you are fighting daily pain. Keep your chin up, I know, easier said than done, but anything worth having is usually an uphill climb. I have terrible days that I DO give in to the fibro, however, keeping my mind active with reading, word games and conversation can distract from the severe pain sometimes. Just take care of yourself and do not let the fibro drag you into depression, it happened to me, depression is worse than the pain of fibro. I wish you the best.
 
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Alwaysinpain1014 responded:
Hi cjh1989, i don't know if the things you named are symptoms but all you discribed i have all of them and more, I've been very moody, sad and sometimes angry because of the pain and when it rains my entire body hurts and i can barely move, trust me when i say I KNOW EXACTLY WHAT YOU ARE GOING THROUGH!!!!! We just have to pray and thank God that we are still here, if you need to talk just send me a message. have a very Blessed and Painfree day:-)
 
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AuntieChar responded:
When my fibro started I was having frequent migranes and I became very hypersensitive to smells & odors. I had many er visits with severe chest pain & odor induced migranes. I have suffered with depression & anxiety for 20 yrs, which I understand now is a major symptom of fm. I woke every morning feeling as if someone had kicked my ribs in during a bar fight the night before. It hurt to turn in bed and hurt badly just to breath. The puzzling part to me then, was the fact that after several hrs the pain was gone. I had several instances of fainting, I was told my blood pressure was dropping to quickly at times and that was the cause. Stress and lack of quality sleep are major factors in my levels of pain. I suffered severe jaw pain during which my teeth wld also hurt to the point that I was incapacitated from the pain. I also experienced dibilitating "electric~shocking" pain in my kneck, that wld travel across the top of my shoulder and down to my shoulder blades. Muscle spasms & joint pain cause me extreme discomfort sometimes too. I have constant challenges in my balance and memory functions as others have stated as well.

Right now Neurontin has been a life savor for me!! It helps the muscle spasms and "electric" pain from the fm. I also take 3-6 mg Melatonin for sleep every night, hydrocodone 5 mg as needed for joint and muscle pain, as well as Flexeril for muscle spasms. I take depression medication also. There are times when I almost forget for a few minutes that I have fm. And there are also times when I pray for God to take me out of this world and on to the next so I do not have to suffer with this daily. I took Lyrica for a year and a half. I swelled up with fluid so bad I had to quit taking it. I also tried Cymbalta, I didnt feel it really did much for the pain and I had headaches daily on it so I quit it too.

Hang in there!!
Char H.
 
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milly responded:
hi cjh1989, I am a 60 yr old lady from Nottingham, England. I was diagnosed with Fibro 28 yrs ago. I was on Amitryptiline for most of those years. But recently my pain went to the base of my spine and down my legs. My doctor decided the Amitryptiline wasn't doing its job so took me off it. Instead he gave me Gabapentin for pain ( given to people with Epilepsy) The amazing thing is that my brain functions better. My memory is better, I don't get memory block half way through through a sentence, I can have normal conversations with people ( instead of avoiding them because I can't think what to say) I feel like me 28 years ago!!!!!! Everyone has noticed the difference. I have found over the years that most meds given for Fibro really don't help much and in fact can just make things worse. With your doctors permission, try coming off all your meds, After 2 weeks try Gabapentin. It is a wonderful feeling to have a properly functioning brain, and at your age you need that. I have recently required symptoms of poor balance, stumbling and tripping. I wasn't sure it was to do with my Fibro, but since you mention it, maybe it is. Another thing i have to help with pain is injections, We have pain clinics here which do them. I have pain block or Epidural into my spine, and cortisone into joints. They help a lot. To live with this condition at your age is very difficult and depressing. My heart goes out to you. I hope I may of been some help. Let me know.!!
 
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deansmimi replied to milly's response:
milly, I have recently had pain in my spine, hip, groin, and down to my knee, and it has made it very difficult to walk. I've always been independent, even though I've lost most of my reach because of the fibro in my neck,both shoulders, and down both arms. also both arm muscles are very painful. To take a shower is a real chore, as I have such a hard time washing my hair. I have a rod over the middle of my bathtub
that I have to put my right arm on to wash that side of my hair, then turn and do the opposite for the left side. But....I have been so thankful that I could use my legs without any pain, until now. Now I can't do my grocery shopping, and it
has been so hard having someone do it for you. A neighbor, with two girls volunterred the first time, and for future
times, but has been very hard to reach for a second time. I
refused at first, as I know she has responsibilities, but she insisted, probably because through the years, I have never forgotten her daughters birthdays and xmas's.
What I wanted to ask you is what strengh gaba pentin you are on? My Dr. prescribed 100ml only at night to start for a few days, then another in the morning. I might as well be taking a placebo, as it has done nothing for my pain or mind. I woul appreciate knowing what strength and how you take it, so I can discuss it with my Dr. after the weekend.. That is all I'm on right now for my pain, and it just doesn't touch it. Thank you so much. I'm so happy for you that it's working so well..

Marie
 
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georgia888 replied to deansmimi's response:
Hello Marie,
I'm sorry to hear of your difficulties. Do you have co-existing conditions (osteoarthritis, etc.) or is it "just" the Fibro your dealing with?

I can't speak about the gabapentin as I've never tried it but I can comment on warm water therapy. I visit a gym with an 89 degree pool & it has helped so much with flexibility & consequently, mobility. Over the years, the many doctors & therapists I would visit for my Fibro & OA all recommended warm water exercises. They were right!

If this conservative treatment is feasible for you, please try it.

Let us know how you make out with your doctor & perhaps higher dose of the gabapentin.

Good luck,
georgia
 
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ladyprettyman replied to georgia888's response:
I have been ADHD all my life. Always figured some things were connected to ADHD because I have always distracted easily except if I was reading a book (my strength). In 1979 I had an accident and damaged and messed the C%-C6 in my neck.
Looking back I've had fibro for a lot longer than I was diagnosed which was 2005. I guess a lot of things I thought I screwed up on my thinking. When they put the titanium plate in I had a day or two without pain. I wanted to go back to work so bad I ignored the stumble and falls etcetera. After six months I knew it wasn't going to happen.
I took hydrocodone (very low dose) and the doctors would never listen to me about the pain just getting worse, so I added alcohol to the mix (and I pretty much hate most alcohol) to try and alleviate the pain.
In 1981 I don't think anyone knew about fibro. My luck!
Forgot I also have suffered from migraines since I was 20.
Now I suffer from chronic and complex migraines.
When I faced the fact I wouldn't work again I had a couple more kids; all with varying disabilities (ADHD which I don't consider a disability, bad Asbergers and mild Asbergers) And through it all I suffered with pain. There were many times I wanted to just shoot myself because it hurt so bad. I've tried many things to alleviate the pain, some worked for short periods or not at all or I developed an allergy to the medication. I take 600 mg of gabapentin a day (Dr. says we can go up to 900 mgs). I've had 2 doctors recently ask me if I'm taking blood thinners due to all of my bruises. I used to take 10/325 mg hydrocodone 8 pills a days. for about 3 years.. That's a lot of acetaminophen a day be taking.
Just recently had botox shots to try and alleviate the pain of daily migraines. Not working too well.
Have taken Cymbalta and on and on to try to get a handle on this blasted pain. How much of this pain is exacerbated by the fibro.
Have learned a lot by the postings and truly appreciate them as things I thought were connected to my job accident were not..
Read somewhere that an accident can precipitate fibro. Wonder if it is accurate.?
 
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BetteK replied to ladyprettyman's response:
Oh, my goodness. Of course fibromyalgia crosses all boundaries of race, class, and sex. You are dealing with one very complex mix. You need some expert care.

Can you see a medical school-based neurologist? Someone really up in the field? That way you will cover all the bases from the migranes to the ADHD to the fibro.

Yes, most of us get migranes some of the time if we have FM long enough. Like many of our symptoms, they may come and--hopefully--go. (Mine went when I had LASEK eye surgery and got rid of the glasses that were "correcting" my 20/400 vision.What a relief!)

When I was on Neurontin (gabapentin) my dosage was 600 mg. 3 times a day for a total of 1800 mg. A poolmate was on the same dosage.

You're right about the short period of help from your meds. Our neurological system "rewires" itself quite quickly to go back to processing information in its own way.

You're right to worry about all that Tylenol. It does a nasty number on your liver. And who know what all the other meds are doing througout your body.

Please try to find a warm water pool where you can get physical therapy or do aquatic aerobics. They are fun and, unlike other forms of movement, have almost no chance of making your fibro worse.

Check out some self-help books from your library. My favorite is Managing Pain Before it Manages You. It is full of ways to make your life better while we sit around waiting for a cure.

Bette


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