New here.. not new to Fibro

[kataylor62]

Hi folks. I am a 50 year old woman who was diagnosed with Fibro almost 2 years ago. I found the site in my search for relief. It all began in 2011 when I could no longer wake up or stay awake and I started having severe muscle fatigue. I started with my family doctor. He tested me to every specialist imaginable (endocrinologist, cardiologist, gastroenterologist and the list goes on). My dermatologist sent me for a routine exam with a rheumatologist for my psoriatic arthritis and during general conversation about my overall well-being he started checking me out head to toe and then said "You do know you have Fibromyalgia right?" ughhhhhh.. those dreaded words... See I have suffered most all my life (since early teens) with some pretty rough conditions already (Psoriasis, Psoriatic Arthritis, Hidradenitis Suppurativa, and panic disorder). Anyone familiar with these diseases will understand, having fibro to add to the mix was almost more than I could handle. Since that time I have tried so many treatments, pharmacological and holistic all to no avail. I continue to get worse daily. I currently am faced with the decision to have to live with a family member because I can no longer care for my self safely. I have sever hypersomnia, chronic fatigue and muscle weakness, widespread pain, trouble concentrating and focusing (fibro fog), difficulty with breathing, severe headaches, and most recently I have knots under the skin that I think are lipomas and I what I think is going to be diagnosed as IBS due to the recent onslaught of bouncing back and forth between diahrea and constipation with severe stomach pains. On top of it, the medications that I have tried over time gave me an anal fissure.

Im only able to bath about once a week, I cant get in and out of the tub most days. I cant put on clothes a lot of days due to the muscle weakness or pain associated with the fibro and/or hidradenitis. I cant cook, clean more than a dish or two at a time and spend about 90% of my time home sleeping because I cant stay awake.

I am scared and I cant seem to find a doctor who really understands all that I am going through. I am currently in a battle with my work because I asked for accommodations under the ADA. They are dragging their feet about responding, nit picking me about everything and since I turned in the paperwork have deteriorated to the point that even the accommodations wont help enough.

I am so afraid that I am going to give up looking for relief because I have no energy left and I am running out of ways to pay all the medical expenses. Just in the next two weeks I have over $400 in just copays for medical appointments.

I spend almost every waking moment researching the diseases and treatments trying to find something that will help. I have tried Cymbalta, Nuvigil, gabapentin, tramadol, butrans, effexor. All of them make me worse off, give me other conditions to deal with or do nothing at all. My next stop is a psychiatrist next week. My family doctor and the pain clinic have exhausted all their options and want me to see someone who can prescribe some other treatments who are more comfortable with their effects, they have both mentioned ridalin. At this point I would see a witchdoctor if it was recommended.

Anyway, I just thought I would say hi and explain what i have going on to someone who would listen and understand what I am going through. While my doctors are trying, I dont think they truly understand the effect this is having on me as a person.

Karen

 

[fibrogal]

Hey, Karen....I'm new to this site as well. Boy, you've really been through it! I am so sorry that your life has been filled with so many health issues and that you're now going to need to move in with someone to care for you. I can't imagine how difficult that must be for you. I know you'll get lots of great support here, and hopefully some answers to questions and concerns. At least you're among people who understand, right? Anyway, I just wanted you to know I was new, also, and that I sympathize with what you're going through.

Take care.

 

[1sweed]

Karen,
Welcome to the forum. You have been put through the wringer with doctors and your other illnesses, but there is some hope for you because I can sense by your post that you are a fighter, meaning you don't want to give up, but your running out of ideas. Let's see if we can help you a bit. By the way a mental health doctor is good to see because just having someone to talk with aside from medication, will help ease your mind and heart. You sound scared and filled with stress and anxiety. But you can handle this with a plan. A take charge of your heathcare, plan.

Now I know you are wondering what in the world is she talking about? A plan is a way to manage your symptoms without loading yourself up with mind-deading drugs and yet be able to live reasonablely comfortable.

First to help you sleep better look for a cotton fiber bed pad or a feather bed pad. They come in all mattress sizes and are about 3 inches thick. If you can not find one or can not afford one, use a comforter doubled over and placed on top of your mattress, but under the sheets. This padding will give you a better nights sleep as your muscles will relax and you will feel like your sleeping on a cloud. Thus your sleep pattern will improve.

Next I know you said you have trouble bathing. Do you only have a tub and no shower? Either way the hard part is getting up and out of a tub. So have a friend get you a bath mat and a plastic lawn chair or handicap plastic chair. Put the mat in your tub and sit the chair in the tub. Add some water to the tub and wash yourself while sitting in the chair. If you have a shower head, a spray head with tubing can be attached to help rinse off. That way you are not down in the tub trying to have enough strength to get up and out. If necessary have a friend come over to help you get into the tub and get back out. Also a bath can be taken at the sink if necessary. Just soap up with liquid soap and rinse off using a washcloth.

Make dressing easier get some pull on clothes that do not require buttons or zippers. Pullover dresses.

Mostly STOP researching and start dealing with what you have. I went through what your doing and it made me hyper nervous and tense. All I could think about was that miracle cure that would solve all my aches and pains and make things go back to normal again. Well I hate to tell you this but it does not exist. All I did was waste time and money searching for answers where there are no answers. I ended up in debt and broke.
My stress level and anxiety level were so high I could not sleep or eat, or think. And finally I knew I needed a plan to get my life on track again.

So you have fibro. I want you to try relaxing. Start watching good funny movies or read good books. Try your hand at a new hobby like learning how to do some craft like painting or needlework. If possible watch the wildlife like birdwatching. How about putting your free time toward helping someone else cope. May be you can not physically help, but by using your computer or talking on the phone with friends, and asking them about their day, can take your mind off your troubles.

Meals use the microwave. Pay or ask a friend to get your groceries and cook up some meals for you. Use TV dinners as a last resort.

And read, read, read here at the forum. There are lots of good coping skills offered by members. Try welcoming new members in and making new friends here. Don't let yourself sink into drepression. Know that we care and will do our best to answer your questions or just be there when you need us. Feel free to post anywhere on the forum and do not be afraid. Have courage and faith in yourself and things will improve a bit with time. I look forward to seeing more posts from you on this forum.