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I am losing it here
9 Replies
Coni - May 6

I am new at this, and don't know exactly how this works. I have been diagnose with the following

Blood Pressure

I take about 12 pills during the day and 1-2 pain pills at night depending on the pain. I get hot and cold to the extremem there is no happy median there. I stay in pain constantly, and have trouble walking, standing, sitting and doing daily chores. Sometimes I get so confused I can't remember if I ate or took my medicines, and it is a chore to stay on a daily schedule. I have been going through this now for three years, I was diagnose all in the same year with the exception of High Blood pressure I have had most of my life. My blood pressure runs 210/120-140 most of the time. I am just at my wits end and don't know what to do anymore. I see my doctor every other month, and that depends if I have the money for the co-pays on my ins. I feel so sorry for my husband / son they do everything around the house for me now. I work from home but then I have good and bad days so that sometimes is hard to do. When I try to talk to my friends they don't seem to understand the extreme pain that I am in, because to look at me I look healthy. I have to walk with a cane at times when things are really bad. To walk up a flight of stairs is torture. Even to take a shower is hard, but I do everyday.
The meds I am on

Amlodipine 10mg (high blood pressure
Triamterene-HCTZ 75-50 mg (water pill and blood pressure)
Catapris patch 2mg (blood pressure)
Savella 100mg (Fibromyalgia and neuropathy)
Provigil 200mg (to give me energy)
Vitamin D (4000 iu)
Vitamin C
Vitamin E
Klor for potassium
Iron Pill
Metformin (diabetes)
Pain pill for nights

Now you see what I have to take every morning, and if I forget I begin to get so loopy and can't figure out what's what. If my son/husband are here they usually can tell that I miss meds, and try to get them in me if it is not to late in the day.

I don't sleep, I wake up about every hour and some nights I don't sleep at all for a couple of days.

I am just so tired now, and just don't know what to do anymore.

I just don't want to burden my husband anymore than I have already, he works 12 hr days and still has to come home and help me.


kentucky girl - May 6

I can totally sympathize with you. Until you have FMS, you don't know what torture it can cause. I think you will find support here and may be able to pick up some helpful tips from the group. Don't give up. Keep fighting. What pain medication are you on and why do you only take it at night. I have found that if you take pain meds first thing in the morning, the pain is more manageable. How long have you been on Savella and do you think it's working? My doctor just put me on Savella about a month ago. Some days I think it's helping, but other days I'm not sure. I can definitely tell that my pain is worse in cool damp weather. I think it has to do with the barometric pressure.

I know you are dealing with a lot more than most of us here, but we will give you support whenever you need it, or just a shoulder to cry on sometimes.

Hang in there.


kvc33 - May 6

How sad that you are dealing with so much. Iron pills are poorly absorbed, you might want to try a liquid iron supplement called floravit which is made from natural sources. It's available at health food stores. As you may already know there are different kinds of anemia and the type you have may not respond to iron supplements. Is your diabetes and high blood pressure due to being overweight? If so, ask to see a nutritionist who can help you manage it. It sounds as though the pills you are taking aren't doing much good as your blood pressure is still high. Ask your doctor about the wisdom of taking pills that aren't working for you. You need to get your stress level down. Try deep breathing exercises, positive visualization and gentle yoga if you can manage it. Use a pill box to organize the meds you need take for the next day, that way you will know what you have taken. You may be interested in reading a book called, "Your bodies many cries for water." Your situation CAN improve. I understand exhaustion and not knowing what to do. I find that writing down my thoughts and ideas is a great help to me. Since your sleep is so poor you may benefit from having a sleep study done. You need to find out why you are having so much trouble sleeping. Is it due to pain, your partner jostling you, being too warm, worry, a problem in your brain, one of your medications? Good sleep is essential to overcoming your health problems. My best to you.


Fantod - May 6

Coni- Hello and welcome to the forum! You have definitely come to the right place to find good information and a group of very caring people.

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 recognised by the National Arthitis Foundation and the Center for Disease Control. OTC remedies do not work for the type of pain associated with FMS.

Take some time to read through all of the information contained in the blue boxes on the lefthand side of this page. There is excellent concise information on FMS and the "perks" that can be associated with it. 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 here is to become educated as possble about FMS. Knowledge is power.

If you don't want to share this site with your d friends to get them on board, there are a couple of other options. Go to the National Arthitis 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/or 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. Personally, I have a wheelchair which I use as needed. I've had people question me because they see me with it and then without the chair. It all depends on the day. 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.

You don't say what type of doctor diagnosed you with FMS. A rheumotologist is best suited to help you manage your symptoms. You may want to consider going to the National Fibromyalgia Association website and registering. Then you will be able to see a list of fibro-friendly doctors in your area. I'd seriously consider seeing someone else to get a fresh set of eyes on your situation. Make sure you take copies of all of your recent bloodwork/tests and medical history to save time and money.

There are now three primary medications used 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. The second option is Cymbalata which is an antidepressant which 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. I see that you are already taking Savella. Have you already tried the other two medications? It takes time and alot of tinkering to find the right doseage and medications to make you feel more comfortable.

Another suggestion would be to find a pain specialist with an interest in FMS. I have a rheumotologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

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 (me) without having Celiac Disease. This issue 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 days 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. I can not stress enough that your lack of sleep is adding to your pain levels and cognitive function problems.

If you need help paying for your prescriptions it is available. Each drug manufacturer offers consumer assistance to people who can not afford their medication. You should be able to find the information by going to their websites. There should be no shame in asking for help. We all need it at one time or another. Even with insurance, most of us who are chronically ill have trouble managing our expenses. If things get better for you, than do something to help someone else or give back to your community.

In terms of diet, if you use anything containing an artifical sweetner, get rid of it. That also includes Splenda. If you require a sweetner, 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.

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 managable 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.

Everyone on this board has multiple health issues along with Fibromyalgia. You are certainly not alone. It is a lonely and frustrating situation to deal with. Don't be too hard on yourself. It sounds like your family is very supportive which is really great. You are not alone. Let us know how we can help. Take care and God Bless.


STAYLOR875 - May 6

I didn't see a pill to help you sleep. The important thing about Fibromyalgia is you need sleep good at night. Maybe you could ask your doctor to prescribe you something.


Coni - May 7

I have tried Cymbalta, couldn't deal with it, because it wouldn't let me eat for days at a time. Tried Lyrica but kept my stomach upset. I am on Savella now, been for about a month, and some days it works and some days it doesn't. My high blood pressure is from my being over weight, and I have been trying to deal with that. I want to exercise, my mind is set to do it. But my body isn't agreeing with me yet to do this. I am seing a reumatologist for this, but you know I think I need to find a new one, because when I see her it is about for 5 mins, and next thing I know I am on another new med, or have been diganosed with somthing else. I tried to talk to her and tell her what is going on for example, that my glucose # are high, that my body is having spasms real bad at night, and in general how I feel and she just over talks me and gives me a presciption and pushes out till my next appt. I want a doctor that will take the time to listen and hear what I have to say.

I do have a pain pill for night I believe it is called Norvac , not sure it is upstairs. I am so afraid to take any during the day, since I am home alone, during that time. I have already had a couple of incidents when my sugar fell to low, and I almost passed out. I know I should see a nutritionist, a pain specialist etc... but i have to admit with the economy the way it is finances are very tight, so I am trying to see what I can do on my own before incurring additional bills.

I appreciate everyone's comments and suggestions, and will definitely try to incorporate them in my day. Can someone send me the website for National Fibromyalgia Association so I can check into getting another doctor and start there.

You know it is funny, I had to have the light/gas company put me on a medical baseline, because I have to have COLD air at all times, I get so hot, that my hands and feet turn RED, and then they turn BLUE it is like being frost bitten over and over again, that is from the Reynauds Disease, but if I put gloves and socks on I get extremely hot, and have to strip them off before I faint, my poor husband sleeps with about 3 blankets to keep him warm if I am in the bedroom, because it is like Alaska in there.

I have to admit, writing and typing about this has been some relief today.

Thanks to all of you, I hope you day was well and your night is even better


Fantod - May 7

Coni - Go the search engine Google and type in "National Fibromyalgia Association" That should pull the website up for you. We are unable to enter website addresses on this board. I hope that this helps.

You have got to find another doctor who is going to work with you and not talk over you. See what you can do with this suggestion. The sooner the better. Take care.


Fantod - May 7

Coni - I want to back up and say something else that may apply to your current doctor who is treating the FMS.

There are still plenty of doctors out there who think Fibromyalgia is a figment of collective imaginations. She may be one of them and is doing the bare minimum by providing you with Savella. You need sleep medication badly. That ommission is pretty inexcusable all by itself. I take a pain pill at night too but I also must take sleep medication to make sure I get restorative sleep. There is a difference between pills for pain and sleep medication.

The fact that this doctor is so disrespectful to you by talking over your questions and concerns is also alarming and unforgivable. Personally, I don't feel that throwing more prescriptions at a very complicated medical situation is an answer.

Most of have had to learn the hard way that we have to be our own best advocates when it comes to dealing with Fibromyalgia. And, we've all been to at least one doctor who treated us badly. I threw one out of the exam room and went on to have him offically censured by the hospital that he is affiliated with as well. You have to stand up for yourself and insist on proper care. If that means changing doctors than do it. You pay their salaries and they,at the very least, should have the courtesy to listen to how you feel about your health situation. I hope that you will become more proactive about your care in the future. Take care.


STAYLOR875 - May 8

Coni - you definitely need a new doctor. I went for years being diagnosed with RA and I would ask my rheumatologist if he thought I had Fibromyalgia and he would press one spot and say no and I don't treat it any way. It got so bad that I begged him to help me and he only gave me a steroid pack and would not give me anything stronger then the darvocet I was taking. I saw him for 10 years and he treated me like I was making it all up. By the way he would only give me 5 minutes as well. I decided enough was enough and I got a new Rheumatologist that I love. Not only did he diagnose me with Fibromyalgia he said I did not have RA and that I have Psoriatic Arthritis and my x-rays confirmed it. He spends as much time with me as I need and answers all my questions. He immediately prescribed stronger pain meds a good sleep aid and Humira for the Psoriatic Arthritis. I was already on Cymbalta because my general doctor diagnosed me with chronic pain before seeing the new Rheumy and put me on it. I can say everything has made a difference. I am right now having a bad flare but I know I will have some good days soon and so will you. Get a doctor that will believe in you and spend some time with you. You deserve it. Sandy


axxie - May 8

Connie, welcome and I'm sorry for your problems that you are having. They are multiplying. One of the things I will not tolerate is a doctor who don't want to give me the time of day. I know it's going to be hard for you to summon the courage and find a new arthristis doctor, but you can do it. Go see your generalist and ask this doctor if he can give you a break on the co-pay. Sometimes they will. Ask the generalist to help you. The one thing you should do is write everything down prior to your appointment and write down what you need and what you think would probably help you. Go over your meds, write them down as to when you are talking there and what are the side affects. The generalist should be able to help you with that. I trust it will take sometime for you to absorbe everything that was said here, the only golden rule is, write your feelings when you can in diary. The second golden rule, write the name of your medication and times you need to take them and last your physical discomfort. Go see the generalist.....he/she should be and would be appreciated that you see them to help you out.

In the meantime if you are in pain you take pain pills, take half if you have to but do take them. Keep your lines of communication open and do come and see us.



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