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Fibro rant - family, money, dreams
5 Replies
sami845 - August 31

I was officially diagnosed with Fibromyalgia today. This is a good thing because I'm finally diagnosed. I already have Rheumatoid Arthritis, Endometriosis, Migraines, and now Fibro. I've had the symptoms of RA since the age of 2, and couldn't get a doctor to listen to me until I was 28. With the Fibro, I can trace the symptoms back to the age of 11. I'm now 30 and I'm pretty mad that I've gone all this time with no one listening to me. I feel redeemed that I really do have something and it's not all in my head.

However, even with the diagnosis, my parents didn't exactly support me. My mother believes I just need to exercise and take anti-depressants because it's a mental disorder that's all in my head. (isn't that what she said throughout my entire childhood that kept me from being diagnosed in the first place????) My father wanted me to get a second opinion. This was the fourth doctor I'd seen who mentioned it. He's just the first who wants to actually treat it.

As far as treating it goes - the meds would cost me $55/month. I already spend over $200/month to treat my other medical issues and I only make $11/hr. I really can't afford to take the medication. There is no room to move in my budget, it's stretched as far as it's going to stretch.

I have a Bachelors degree in Health Administration. I had to struggle for 8 years to get it. I worked full time and went to school, supporting myself the entire time, no help from anyone. I did that while being sick with RA, Endo & Fibro not being treated. It truely was a struggle and when I finally got my degree I was so proud that I really did it. However, it seems I may never get to use the degree. I graduated in 2007 and got an entry level position at the local Hospice. From what I know of Fibro & RA stress = bad. From my experience I know that stress makes my pain and fatigue worse. This probably means I shouldn't go into management. Which means I blew $60,000 in student loans and 8 years of struggling for a degree I'll never be able to use because of my health.

 

Kristina17 - August 31

I'm sorry to hear that you have endured so much frustration. None of us here are able to make it better but we can show you understanding because we have all gone through and are going through similar things. It's the biggest comfort to me at the moment when I know there are people out there who do understand this awful condition because they have it too.

I've had Fibro for probably at least 10-13 years, I'm currently 25. I've had weird health problems popping up since I was about 12 but the chronic pain didn't start til 2001. They of course diagnosed it as RSI to begin with and all these other lame excuses but I wasn't willing to accept that. I eventually had someone who was willing to take me seriously and explore these issues more. I am so grateful to have a very great and understanding rheumatologist and he does so much for me. I too have other conditions: insulin resistance, chronic iron deficiency (currently under control), chronic rhino sinusitis, and Fibro as well as having Asperger's Syndrome. Then of course there is also all the sub-conditions and weirdness of Fibro as well.

I'm a high school teacher and at the moment I too and struggling to keep up at work when my job is so so stressful. I am learning of late that I have to look after myself. I'm not sure I really know how but I know it's what I really do need to do. Please remember that we really do have to do that for ourselves, our bodies can't handle too much all at once but we can still have a fulfilled life, just maybe not what we originally planned.

Hope you have more better days than others.

Kristina

 

Fantod - August 31

Sam845 - Welcome to the board. I am so sorry to read your story and how long it took to get a proper diagnosis. Unfortunately, your story is not uncommon.

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation and the Centers for Disease Control and The World Health Organization. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

With regards to medication costs, all of the pharmaceutical companies offer assistance to people who have trouble paying for medication. You can find the information by going to their websites and finding the consumer assistance section. Ask for samples when you are at the doctor's. I use a lot of medication myself and I am on my own financially. I have had occassions when I have had to ask for help from my doctor. They usually have samples available but these days if you don't ask, you won't get them.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

You might want to consider doing an exercise program like Tai Chi to help you manage your stress level. Tai Chi is particularly recommended for FMS because of the combination of a meditative approach and exercise. If you are commited to having a career in Health Administration you'll have to think outside of the box to get there. You have every right to be angry about your situation but continuing along that path will only make your symptoms worse.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, the National Fibromyalgia Association website has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. If you feel that your current doctor is not addressing your needs, than get a second opinion. Be sure to take a copy of your medical record and current tests with you to save time and money.

I hope that you will continue to participate on the board. Good luck and God Bless.

 

sami845 - August 31

Kristina17 - thanks for being understanding. My rheumatologist isn't very understanding and moves at a snails pace. Unfortunately, he's the only one on my insurance within 50 miles of where I live. It doesn't give me much choice. I used to have chronic iron deficiency, however, between the treatment for RA and a change in diet I've been able to control it. I learned that foods like soy & spinach, etc deplete your iron. I used to have chronic rhino sinusitis, however last year I had major surgery to get rid of it. And it worked! I haven't had a single major infection since! I highly recommend you look into sinus surgery, it was def worth it. The recovery was almost painless and I was only uncomfortable for a few days. My allergies immediately decreased and my chronic sinus infections are a thing of the past!

The career thing is going to take a long time to adjust to. It's something I've always wanted, but now I don't know if it's truely worth it.

 

sami845 - August 31

Fantod - thanks for the welcome :-)

I've actually been taking topamax for over a year now, for migraines, and it works by slowing down nerve signals. When I started taking it i immediately noticed a decrease in my pain levels. That's when my PCP figured out I had a nerve disorder. Since then it's been a search to figure out what I had exactly.

Due to my RA I can't take OTC meds as I have to take max RX strength anti-inflammatories and percocet for it anywho.

One of the worst problems I've had is cleaning. I can't keep my apartment clean. The landlord hasn't been the most understanding person about it, but there's literally nothing I can do. I do what I can and thats it. There's no food out, nothing to attract bugs. It's just messy. Unfortunately there is no one else out there to help me clean up.

It is interesting how happy you can get when you climb the stairs for the first time without being winded and in pain. I post on facebook for milestones like that. Things that most people take for granted.

I have a rheumatologist and a pain managment doctor. I asked for samples, but they wouldn't give them to me if I wasn't going to buy the drug when the samples ran out. I'll try the pharmaceutical companies and see where that leads me.

I haven't been tested for vitamin D deficiency, however I do have Celiac Disease. That was diagnosed back in 2003.

Restorative sleep? Whats that?! I haven't had restorative sleep since I was an infant. I've literally been an insomniac since the age of 2. I lay down for 6 hours each night and during that time I wake up 3-5 times. No REM sleep for me! I've been given lots of different sleeping pills, but they have an odd effect on me. They make me hyper. The best thing to put me to sleep is speed, however, I can't take it with my current medications.



The allydonia comes and goes. Now I have a reason for screaming when people touch me. They used to just look at me like I was causing drama.

Luckily i've never liked "fake" sugar. It's always tasted like poison. I generally don't eat fried foods or breaded foods. Lunchmeat is a rare occurance. Wine is a thing of the past. I'm not allowed to drink on my current meds due to their own distruction of my liver.

I found a support group, but it meets Tuesdays at noon, while I'm at work. I have a therapist I've been seeing for years.

I try to swim once a week for excercise. The problem with that is that I pay for it for the next 4-5 days with pain in my joints and muscles. Even the slightest activity, like grocery shopping comes with it's physical punishment. I've had to learn to shop every day rather than once a week. I nap every afternoon instead of living my life. I had family come down from another state that I hadn't seen in a long time and I couldn't spend time with them. They were at an outside restaurant with a live band. My meds make it so that 15 minutes in the sun = sunburn, plus a great side effect is that I don't sweat. Not sweating means not being able to control your body temperature. So no going outside for me. The live music?? No way! Migraine city! When I had to turn them down the entire family looked down on me like I was trying to cause drama. The stress of them looking down on me caused a weeks worth of pain and fatigue. Oh how fun.

 

Fantod - August 31

For sleep you could always try going the homeopathic route. I use Melatonin and Calms Forte. You can find them at a health food store. I've had poor sleep since I was a kid too. "Growing pains" and all kinds of other unexplained problems until I was finally diagnosed. I hope that you can get some help from the pharmaceutical companies. Take care.

 

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