I've got to Come Up With Something to Help

Glad to hear I'm not the only one! Does it ever get better?

God, I hope it get's better sometime it's just that when your feeling really rough you don't see an end to it.

I haven't been checked for MS. How is that diagnosed? I've had tons of bloodwork done; full bloodwork for lupus, thyroid, etc... and it all came back normal. we;ve done this a few times over the past two years or so. Problems with meds is that I am SO sensitive to them. Like even my psychiatrist has had a heck of a time getting me on the right combo that I didn;t have a horrible reaction to. We tried adding a little more of the Topimax, but it made me sleep all the time and my parents would get p*ssed at me for sleeping all the time even though i can't help it. I currently live with my parents and I have 3 dogs, 1 in training to be my service dog to help me. So i really can't be sleeping all the time if you know what i mean. I've mentioned using a wheelchair to help to my parents, but their response was this "You don't need a wheelchair! You can walk, you just need to exercise!" like yes, i do agree that exercise does help to some extent but when you can barely move at all, not fun! And I'm supossed to be going off to dog training school from JUly 2016- December 2016, so I really need to figure something out. My dad HATES it when I go to the chiropractor even though it helps me a lot to go there. It's a hard situation to be in. A neurologist diagnosed my fibro. but i'm starting to wonder if it's something else too.

The test for MS is a brain MRI and lumbar puncture plus blood work, reflex tests etc.

What about gluten, have you tried cutting it out? Some people find it helps. How is your diet in general?

You could be hypermobile if things go out all the time. I'm a firm believer that the chiropractor pushed my symptoms beyond a point of no control so I will never see one again.

Your could well need some strengthening excercises also but I understand how hard it is to do, it took me 6yrs of pain before I started doing any excercise and it was just the Pilates reformer I did. I think it helps but it's not a magic cure and it it takes time to build some strength up but that's the good thing as it means you can go at your own pace and gradually build up. It was designed as a physio therapy device for dancers.

I tried topomax and it made me so depressed, I couldn't see the point in anything. I'm also sensitive to meds as I think most people with fibro are.

Is there anything you notice that helps? Temperature, foods, relaxation etc? I think the key is to really go mad on the things that do help to at least feel like we have some control.

I'm suprised your parents aren't more sympathetic as they knew you pre fibro so surely they know that this isn't you. I was super active pre this not with excercise but always in high speed rushing around so I find it strange when people who know that aren't very believing of how you feel.

Good luck with the dog training, what breed is he/she, I'm trying to train my rescue dog at the moment just to not try and kill everyone whilst she's on the lead!

I did try the gluten free diet for a while, but it was too difficult, because my parents still had all foods with gluten. Plus it was EXTREMELY expensive. As for things that help, laying down in a dark quiet room and sleeping is really the only thing i have found so far. My service dog in training is a purebred German Shepherd from DDR/ Czech lines. Lots of drive, so she does keep me pretty active. My mom is more sympethetic than my dad is, but it is still hard. It's like walking on eggshells around them. Say the wrong thing and they explode about how lazy i am and how i need to get a job, etc... There is no possible way i can even think about working at the moment. Stairs are a huge struggle for me, because they cause my kneecaps to pop in and out of place constantly, but we also live in a 2 level house where the kitchen is upstairs. Unfortunally, I lay down a lot, because that is the only time the pain is gone or semi-controled. That's why I was thinking maybe a wheelchair would help me to be more mobile at home especially. I do as much as i can, but most days, that's barely anything and it feels like i've run a mile.

Sadly there is no cure or actual Pain medication that will take all Fibro Pain and symptoms away, and that's medical fact, to date.

One just has to try and modify ones daily duties, exercise gently eg: the gentle Pilate's range, or go to a heated pool and float, stretch and gentle walk or complete some minor aqua arobics moves in the water.  It takes time to adjust to exercising if you've not done any for awhile.  It can cause flares, but as soon as your able get back on board with it again and continue in small increments..  without over doing it, as Fibro doesn not like exercise or repetitive motions especiallhy with weight involved, an gravity!!

Maybe you should give your parents some of these Threads that are posted up in this web page/site associated to Fibro, let them read what other suffers have to say.   I think your dad maybe a lot ignorant on the subject, much like a lot of other folk.

It is a hidden disease and it's also vary variable in any hour of the day or night, week to months and Years.  It can be Chronic and also Progressive for some folk, not all folk.  I wonder about this aspect of Fibro as folk who have succumb to Fibro have done so due to varying reasons.   Mine was due to repetitive direct trauma to my head/neck and spine.  Some other folk are the same, or from Mental/emotional trauma/abuse, some other folk it can stem from surgery or broken limb/s.  An illness with fever can bring it on apparently???  BUT there is also the details that these folk have in common before morphing into the condition/disease.  'Is it an inherited condition that is triggered by the above described trauma's???   There have been medical statements made that it is??   OR it runs in clusters in families, it comes out only when a person experiences a Trauma/Auto immune issue/s etc..  

It will eventually be nailed, sadly probably not in my life time.

Chronic Fatigue is HUGE, as is Chronic Pain with Fibro..  Muscles and ligments feel like rock, and feel like they are tearing off the bones.  I describe it like Riggamortis, hence our joints become involved.  Clicks/Cracks/Munching and painful to touch, aching verterbrae, disc's, and joints, Painful aching..   Dizziness, loss of coordination and concentration, migrains and headaches....  swelling of limbs, body temperature/thermostate haywire, insomnia, Tinnitus, eyesight issues (due to eye muscles and body temps, pain etc)  

Sunlight sensitivity to eyes and skin. Sounds, Brain processing is compromised and we struggle at times with the overloading in the brain and it simply 'whacks us out'...   Brain Fog/confusion. And also the odd turns/fits.  Restless Legs is very common, and I have issues similar but it affects my whole body, and I am chronic when I don't have a minimal dose of Tramadol for my spine.  As Tramadol works in the Spinal cord outwards.  It does nothing for my periferal pain, but helps settle my spinal cord/nerves in my neck/neck to thoracic junction, thoracic, and neck up into my head, and the back left side of my head.  

Some folk have IBS issues, I struggle with constipation more.  

There is endless things we have to deal with on any day, some with and some without warning signals...  

Over all Fibro is Painful, and it causes chronic Fatigue AND it's very debilitating...   

Ask your parents to read some of our posts....  They need to read of some history of others, and their personal journeys, experiences good and bad.  The need to KNOW ,,,, There is no Proven Medical Cure yet, there is NO Proven Long Term Pain Killers to kill our pain, stiffness, and aches, Nor meds to stop our CFS....  period!

Hi Beth, sounds to me a bit like it could be Hypermobility Syndrome, or Ehlers-Danlos Syndrome type 3. I suggest you google these and have a read of the symptoms. Good luck. x

Well said Kayleigh60814

I'm a lot older, but I once had great physical fitness and stamina before being hit with Fibromyalgia.   I also began feeling quilty and my self esteem and confidence took a big whack!!   

I have also learnt the hard lessons re 'Medications'....  Painkillers.  For me, they only partially worked some days for half an hour or an hour a day.  SADLY my immune system would crash, body would become septic basically.  I also learnt that high doses were of no benefit at all and infact made my body stiffness 'worse'...  So, I weened myself down to very low doses, found that if I only take normal doses when desperate to ease back the worst of a migrain etc I am better off in that instant to take the pain meds.   

I refuse to become a Tablet/medication guinne pig given the fact that there is NO actual long term pain killer/s.  And one risks the problems as you Kayleigh have mentioned.

I also now have to use an Elbow crutch/s some days, and other days I really wish I had an electric wheel chair!!  I cannot afford one.  I wouldn't rely on one all the time as we DO NEED to keep mobile, even when in pain.  Flareups of course are a different kettle of fish...

Thank you Kayleigh, it's nice to hear from someone around the same age who has experience with this illness. My biggest problem when it comes to trying medications is that I am extremely sensitive to them, and i am also on psychiatric medication to help control my anxiety, depression, PTSD, Bi-polar disorder, and mood stabilization. Right now, I tried lyrica, which counter reacted with my psych meds. I was so dizzy and hallucinating. it was really really bad! Right now they have me on Topiramate 25 mg once a day. I've had no reaction to it, but when we tried to up the dosage by half a tablet more, i was sleeping all day long, which my parents would get p*ssed at me.

​But here's the real thing; I'm going off to dog training school from July through December of this year. My school days will be from 9 a.m. to 5 p.m. I need to find some way to be able to get through these long school days 5 days a week.

I completely agree! Unfortunally, I am getting flare ups weekly that last 3-4 days on average. Like on Saturday, I went to the mall with some other service dog teams. We were only there maybe three hours max. Afterwards, I came home, and crashed until 12:30 a.m. since then, i've been having a HUGE flare up. Just such a little outing as that should NOT be causing me this much pain and fatigue.