Fibromyalgia

Help & Support:

Websites.

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=89309

http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.asp

Facebook.

https://m.facebook.com/fibromyalgiastories13/

https://m.facebook.com/FibroColors/

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Fibromyalgia can affect people in many different ways, in fact some might have a couple of symptoms whereas another person might have several.
Someone might be prescribed medication and be content with it but another person might be prescribed the same medication and fail to adjust to it.
Therefore, I've decided to write this blog not only to raise awareness of this chronic condition but to show you via several interviews how differently it can affect people.
I've asked each person the same questions and you will see from their answers how different each one is.

I am also diagnosed with fibromyalgia and I've answered the questions too.
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INTERVIEW 1:

What is your name and age?
Sam aka My Sunshine Sparkles (Interview Blogger)
Age 35

When were you diagnosed with fibromyalgia?
2009

What symptoms did/do you have?
Chronic muscle pain. Spasms, fatigue, insomnia, stiffness, brain-fog, diarrhea, cold, anxious, depressed, abdominal pain, coldness, migraines and tingling

How was a diagnosis made?
Various blood tests and x-ray

What treatment have you received?
No treatment

What medication(s) are you prescribed?
Xanax for panic attacks.
Zomig for migraines.
Lexapro for depression.
Lyrica for fibromyalgia
Occasionally I receive an injection in my hip when the pain is at its very worst.
And I often take paracetamol or panadol too.

Have you tried alternative therapies, if so what?
No

Do you take any nutritional/herbal supplements, if so what?
No

Have you made any lifestyle changes, if so what?
I'm currently dieting

What causes you to suffer a flare-up?
Stress is the biggest cause for me although the weather too.

Have you or do you use crutches and/or a wheelchair?
I have used crutches.

What is your prognosis for the future?
A long and happy one I hope although I know I'll still have fibromyalgia.

Do you / can you exercise?
I try my best.

Other than medication, what else eases your pain?
A hot water bottle, deep heat.

How do you explain your condition to family/friends?
I try to explain although I may look fine I'm actually in a lot of pain 90% of the time.
I don't ask for sympathy only understanding.

How has this condition affected your life in general?
The brain fog is terrible, at times I find it hard to remember things and often how to spell a word that is so simple and normally I'd know.
I have fallen in the past when my legs suddenly feel like heavy planks of wood and I collapse.
I don't normally attend parties or social outings although since meeting my partner I'm starting to venture out more despite the pain.

Please explain in detail what a day is like for you with this condition?
My alarm clock rings at 7am 
I get out of bed, sometimes my legs feel like planks of wood and my head hurts as soon as my eyes open which means getting out of bed at times is slow and difficult.
I have a shower and brush my teeth.
I wake my daughter for Youthreach which is a further education centre, she gets ready and leaves.
Most mornings I skip breakfast, I know I shouldn't but I do.
I take my daily medication then I start cleaning my house.
Despite the pain, I push myself as far as I can...
I polish/dust, hoover/mop and if there is linen to be washed I do just that.
I empty the ashes from the range and depending on the weather I light a fire.
After the house is in order I then sit down with a cup of tea or coffee.
At this stage my body is sore and in agony but I refuse to let my condition ruin my life.
I work on my blog.
If I receive mail in the post from my lovely pen pals I then reply to them.
I might have a sandwich for lunch depending if I feel hungry or not.
I then prepare/cook the evening meal for when my daughter arrives home.
Often around 3-5 o'clock, my body feels worn out and extremely tired, I try my hardest to not fall asleep but sometimes it just happens.
When my daughter arrives home, we have our meal.
I tidy up afterwards then take my second medication of the day.
I have a shower and I try to relax.
My back hurts most by evening time, no matter how or where I sit it hurts and often reduces me to tears.
At bedtime I wash then brush my teeth.
As I lay in bed, most nights my ankles feel like they are about to snap in half.
My knees hurt and my legs too.
Sometimes I have major headaches also. 
Most nights I take extra painkillers.

What advice can you give others in this situation?
Seek medical/professional advice.
Don't give up without a fight.

INTERVIEW 2:

What is your name and age?
Angela Chambers aged 39.

When were you diagnosed with fibromyalgia?
I was diagnosed with Fibromyalgia in 2011, but have had rheumatoid arthritis since 2002.

What symptoms did/do you have?
I had severe pain everywhere and was constantly tired. 
I was only able to get around with a crutch.
My rheumatologist didn't know what was wrong as all my bloods were fine so he admitted me to hospital. 
While there they found out that I had fibromyalgia.

How was a diagnosis made?
I was in hospital and my rheumatologist touched a number of points on my body and the pain was unreal.

What treatment have you received?
I was put on lyrica and antriplene.
I couldn't take the antriplene as it put me to sleep all the time.
So I  was left on lyrica for a few years until my stomach couldn't take them as I was vomiting after taking them.
Now I'm not on anything for the fibromyalgia but I take an injection called Cimzia  every 2 weeks for my arthritis.

What medication(s) are you prescribed?
The only medications I am on is a tablet for my stomach (nexium) and Cimzia for my arthritis.

Have you tried alternative therapies, if so what?
I have tried complementary therapies.
I tried Reiki and cranial sacral therapy.
I have been recommended to try massage.

Do you take any nutritional/herbal supplements, if so what?
I just take multi vitamins making sure the they don't contain iron and have magnesium in them.

Have you made any lifestyle changes, if so what?
I try to do as much exercise as possible.  I am hoping to get back swimming soon.

What causes you to suffer a flare-up?
That I still haven't figured out.
I know if I have too much iron in my diet or take iron supplements I have a flare and the heat doesn't agree with me.

Have you or do you use crutches and/or a wheelchair?
Thankfully I haven't had to use crutches since before I was diagnosed. 
I have a stick in the car with me all the time but again I haven't had to use it.

What is your prognosis for the future?
I've been told I'll always have arthritis and fibromyalgia.
I am only able to work part time at present but am in the process of retraining.
I hope eventually to be able to work for myself and on my own terms so if I need a few days off during a flare I'm not letting anyone down and I don't have to spend extra time catching up. 
I don't know how my health will be.
I know I can't work the way I used to.

Do you / can you exercise?
I do a little walking. 
I was going to kettle bells last year and found it brilliant, however, I am not allowed to do them anymore as I had a detached retina last November and the doctors won't let me.

Other than medication, what else eases your pain?
Exercise and rest help.
Sometimes meditation can help.

How do you explain your condition to family/friends?
I don't. 
They have seen me when I was on the crutch and barely able to move.
I don't worry about what they think.
My children have grown up with me having the conditions so it's just a way of life to them.
My husband has seen me at my worse also and I remember him having to help me out of the bed and get dressed.
My sisters seen it with my father as he also had arthritis.
I really don't care how my sister in laws think or know.
I don't explain it to them.
If they ask I'll tell them.

How has this condition affected your life in general?
Apart from having to give up the full time job I had it hasn't really affected my life. At that time I was working 42 plus hours a week and bringing my children every where.
So it was probably good that I gave it up. At times I have to depend on my husband to bring me places if I'm bad.

Please explain in detail what a day is like for you with this condition?
I have to go to bed early as I have to be up at 6.30.
It takes me a good half an hour to get up out of bed.
Then it takes me a good while to shower and get dressed. 
I then call the children at 7.30.
I get my breakfast then I make lunch for my son.
We leave the house at 8.40 to drop my daughter to school and then I  drop my husband to the farm before I drop my son off at 9.10 at his national school.
I then go to work.
My job is desk based so I sit at the desk for about an hour before I have to move.
I repeat this until about 1.30 and then I leave.
I go to see my mother in law before collecting the children. 
When we get home I have either to sit and do nothing or go to bed for a while before I prepare dinner.
I then go to bed after dinner around 8 or 9, unless I don't have to the be up as early.

What advice can you give others in this situation?
I think I would tell them not to worry.
Don't listen to what anyone else says or if they say that it's all in your head.
I would say to them to do things for yourself not for anyone else.
Take plenty of rest, exercise If you can. Do things that you enjoy.

INTERVIEW 3:

What is your name and age?
Lyndsay Nolan Martin and 38

When were you diagnosed with fibromyalgia?
2015

What symptoms did/do you have?
Body sensitive to touch, sore and stiff bones, tiredness and IBS, memory loss and tremors.

How was a diagnosis made?
I've had all these symptoms for many years along with narcolepsy and endometriosis and the doctors decided to see if there was a connection between symptoms.
After 6 months they diagnosed me fibromyalgia.

What treatment have you received?
Painkillers, physiotherapy and counselling.

What medication(s) are you prescribed?
Amitriptyline, Cocodamol, beta blockers and diclofenac .

Have you tried alternative therapies, if so what?
Yes green tea and it really helps.

Do you take any nutritional/herbal supplements, if so what?
Multi vitamins and green tea.

Have you made any lifestyle changes, if so what?
Yes I can't drink alcohol.

What causes you to suffer a flare-up?
Anything and everything.

Have you or do you use crutches and/or a wheelchair?
No

What is your prognosis for the future?
Live each day as it comes.

Do you / can you exercise?
Walking is only thing.

Other than medication, what else eases your pain?
Mindfulness helps a bit.

How do you explain your condition to family/friends?
I try explaining but don't think they understand.

How has this condition affected your life in general?
My social life has disappeared.

Please explain in detail what a day is like for you with this condition?
Exhaustion, painful and hard.

What advice can you give others in this situation?
Research and speak to other suffers so your not alone.

INTERVIEW 4:

What is your name and age?
My name is Candi Foster 
I'll be 57 years old in 2 weeks

When were you diagnosed with fibromyalgia?
I was diagnosed with fibromyalgia when I was in my 30s.
I was also told that I possibly had LUPUS at around the same time.

What symptoms did/do you have?
When first diagnosed I had several years of severe fatigue, abnormal heart rhythms, depression, anxiety, abnormal labs and general flu like symptoms but nothing came back positive.
I was sent to multiple physicians.
I had a positive ANA and symptoms would come and go.
As an RN I would not discuss the diagnosis of fibromyalgia.
I had been on the other side of medical profession.
I worked with physicians that couldn't find reason for symptoms so the gave them fibromyalgia and all the while discussing with their coworker that the patients symptoms were all in their heads, or they were trying to get attention, or even they were attention or medication seeking hypochondriacs. 
I did not want to be placed in the same category as the patients that were discussed.
So I kept my mouth shut about my symptoms and took care of those that  needed the extra support letting them know I believed them and would make sure their information was documented and reviewed by their physicians.
I even dissed what options the patient might have with the Dr.

How was a diagnosis made?
I went through 8 years of symptoms and treatment, multiple physicians and testing.
I believe the physician gave up and gave me fibromyalgia diagnosis just so they didn't have to put up with my visits.

What treatment have you received?
I was placed on plaquneil and steroids when I complained but as the symptoms worsened I tried ever muscle relaxant, antibiotics, medication for anxiety and depression they could offer.
Then I received injection, physical therapy, diets every specialist in every part of the medical field and even went to Mayo  Clinic for an internal bleed that lasted 11 but the physicians couldn't find.
The bleed was found and I had a surgery to repair a Para esophageal hernia with 8 bleeding ulcers inside it.
I had received blood transfusions every other week and iron infusions every other week for several years.
I had several PPICC LINES placed and then had to have a port-a-cat in my chest for the transfusions and infusions while I was admitted in to ICU every week for the treatments.

What medication(s) are you prescribed?
I am currently on;
Cymbalta 90 MG a day,
Lexapro 20mg a day
Ultram 100mg as needed while I work, xanaflex (Tizanidine) 4 MG 1-2  up to 3x day Tylenol arthritis pain as needed. 
I refused opioid or narcotics as I am a nurse and knew the side effects an couldn't work with the medications in my system. 
I tried every therapy, medication and treatment over 25 years that have been used for this diagnosis.

Have you tried alternative therapies, if so what?
Physical therapy  tense units, chiropractor, water arobics relaxation therapy, physiology with CBT and DBT, injections, and diets to rule out allergies or triggers to food.

Do you take any nutritional/herbal supplements, if so what?
I take protein supplements D3 and multivitamin.

Have you made any lifestyle changes, if so what?
Diet and exercise doing water aerobics.
I try to decrease stress and have weekly therapy

What causes you to suffer a flare-up? Mostly stress, overexertion, PTSD symptoms.
Any illness, surgeries or changes in medications or treatments

Have you or do you use crutches and/or a wheelchair?
No I walk with a limp and use walls or stationary furniture to support myself when I walk.

What is your prognosis for the future?
I just gave my notice at my job.
I plan on applying for disability and can only pray that my spouse and I can survive without losing everything we have worked for in the past 37 years of marriage.

Do you / can you exercise?
Not currently as I have had worsening symptoms over the past few years.
I can hardly do my daily activities.
I have to have help even getting out of bed.
I sleep most weekends and never do or go anywhere except work and home to bed.
I can't even do normal housework.
On good days I may cook and try to med it through my work.
On bad days I sleep 20+ hours.

Other than medication, what else eases your pain?
NOTHING sleep, and heating pads with max amount of medication decrease it but never fully relieve the pain.

How do you explain your condition to family/friends?
It has taken almost 25 years for my family to try to understand.
I encouraged my spouse to go to physicians appointment and asked if he would read about the disease.
My friends, well I don't explain. 
If I don't have to.

How has this condition affected your life in general?
I feel I am a totally different person, I have never lived a life without pain, medication, or physicians.
I feel cheated out of happiness, out of doing normal things.
I have become withdrawn, depressed,  even angry at God for allowing this to happen to me and others.

Please explain in detail what a day is like for you with this condition?
Alarm goes off at 4.30 AM so I can get to work by 7.30.
I try to turn off the alarm, take off my C-PAP and gradually get out of bed.
Some days by myself some days with help from my spouse.
I shower and if I am not totally exhausted I slowly get dressed.
I don't eat my spouse makes us coffee and I drive 30 minutes to work.
I sit at a desk almost all day taking 30 minute sessions of standing sitting or adjusting myself to decrease pain.
I no longer do any physical labour as an RN.
I am a psychiatric nurse and do telephone triage and support.
I sleep for about 45 minutes of my hour lunch and often find myself in brain fog between my telephone calls to my patients.
I head home from work at 4.30.
Find my way into the house and rest.
If I am able I cook and usually head to bed at 6.30-7.00 pm.
I don't sleep but 4 hours on a good night.
I lay under my heating blanket and just try not to move.
Not a very exciting life.
No real married life.
I sometimes will Skype with my Grandbabies from my laptop or call just to hear their sweet little voices.

What advice can you give others in this situation?
Don't over work.
Be your own best advocate.
Get in a good support group and don't let others take advantage of you as there is nothing wrong with you because they can't see the disease.