For those who have loved ones with Fibromyalgia who are confused about the disease and don’t know what to do, this is for you.
Hi, my name is Deb Lundquist and I am somewhat of an authority on this disease as I have had it for 18+ years now. In my previous life, I was a researcher as was my husband. Together we have researched this disease, well I call it a disease, ad nauseam. I have written several articles about it and since it has been my husband and my roommate for all these many years, we feel we know it quite well.
My husband has created some unique ways of dealing with it and even had to reteach me how to dress in the beginning because I could not use my right arm. He had to teach me how to pull up my pants with one hand. How to zip a zipper with one hand. How to button blouses with my left hand.
At that time, I had Reflex Sympathetic Dystrophy (RSD), the worst pain known to man, on top of the Fibromyalgia and so I didn’t feel the Fibromyalgia, but I had it. Some of the medications the I took for the RSD were the same for the Fibromyalgia so at least it was being treated, but it was making the RSD worse than it should have been. Many of the symptoms are the same. All of the symptoms are just as confusing.
My husband’s suggestion, his only suggestion to you is this, LISTEN, LISTEN, LISTEN to everything. Listen to everything they say because only they know how they feel. ‘I know some of the things they say sound outlandish, like the bugs crawling on them, but when I saw the bumps on her arm and her trying to brush them off and she told me what she was doing, I believed her. She is overly honest.’ LISTEN! ‘Listen to everything they don’t say. They don’t tell you everything because they don’t think you will believe them. She started scratching everywhere, from her head to her feet and everywhere in between. I looked at her scalp and it was raw.’ LISTEN! ‘Listen when they sleep or rather don’t sleep well and her arms would fly up in the air and stay there and I would gently put them down and up they would go again. Then one night, she completely threw herself off the bed and hurt herself. She had developed REM sleep disorder. Thank God, she had sleep apnea or she would have broken her nose. Instead, she only broke her nose piece in two. She said in her sleep as she laid on the floor ‘damn chicken’’ WATCH!
Yes, he got to the point where he had to help me talk. I would be talking and all of the sudden the word I wanted would completely slip away and I would look at him helplessly and he always knew what word I wanted. He watched me constantly. When I was talking to people, he was with me always. If he wasn’t there, our daughter was and she would support me that way. It is the brain fog.
When the doctor put my RSD to sleep for a while, we started dealing with the Fibromyalgia. We were still dealing with many of the same issues. I was still doing therapy and my right arm has never and will never be what it once was, I lost so much muscle. It has just wasted away, atrophy and dystrophy.
So, my husband has to do all the cooking. I can’t pick up a pan because it is too heavy, let alone stand the heat of the stove or the oven. Give me a hot plate and I will drop it every time. I try to help with laundry, but I can’t do much. A heavy load will not only get my back going, at one time I had 5 bulging discs, but my right arm will drop it. Folding laundry will cause pain in my right arm to increase to the point I have to stop. So, my husband said forget it because I would force it until I cried. I can’t clean the house because of my back. So, I felt useless. Completely a drag on my husband, completely guilty and constantly told him he would be better off if he just left me for someone that could do things with him. That is until he got mad at me! ‘Stop it! I love you and don’t want another woman! You are going to a psychologist again!’ And I did!
You see, that is what we need from you! Love! We need to know that even though we can’t do what we used to do, even though we can’t be the homemaker we used to be, you still love us and want to be with us.
We need you to make us make an effort to get out of bed and get dressed. We need you to help us take a shower because it is hard as hell for us to do it! It is absolutely exhausting and I used to need him in there to hold me up and then he bought a chair. He still had to give me the shower and then as I got stronger I could do most of it, but he still had to help me with my hair. Then I was worn out for the rest of the day, but it was a beginning. I had a purpose. He was helping me to have a purpose!
It wasn’t easy. He didn’t push hard, but he did gently push. See, the RSD had me bed bound. I was almost in an electric wheelchair when the Doctor put it to sleep. We were headed to Minnesota; the pain was unrelenting plus I had a complex chronic migraine and I could hardly move. I was so sick. We got half way to my brother’s, Madison, WI and we stopped for lunch. My husband tried to get me out of the car, but I couldn’t. My legs wouldn’t work. I started crying. I couldn’t stand. I sat on the floorboard of the car and cried. He told me to stop it, I was only going to make my migraine worse. He left for a minute and I don’t remember anything for the next 10 minutes I was just blinded by pain, but then after that I could stand as long as I had my cane and his arm. We went in and ate. After that, I got back into the car, laid back down and went back to sleep. When we got to my brother’s the migraine was gone! It was the night before my nephew’s wedding. We went to the rehearsal dinner. I couldn’t believe I could go.
The next morning, I hopped out of bed, yes, I said hopped and started moving around like the little energizer bunny. My husband looked at me funny and I said what? Then I said, ‘something is wrong, but I don’t have time to figure it out.’ I got ready to go to the wedding and went down stairs. Got my own breakfast, which I never did. My brother and sister-in-law looked at me funny. I said, ‘yes I know something is wrong. I don’t have time to figure out what it is, I’ll figure it out later.’ My brother said, ‘sit right here and I think you will figure it out right away.’ So, I sat. It hit me right between the eyes. No pain! I was in remission! I was as weak as a kitten but I had no pain! Every other symptom was gone! It might have been my nephew’s wedding, but I had been given the best present of my life. It lasted for 7 heavenly years.
During that time, I did therapy, a lot of therapy! My husband supported me every step of the way. That is what we need from you! We need your support! We need you to help us figure things out. Whether you are our partner, our parents, siblings, friends, whatever, we need you to help us to stay with us. We need your love and understanding. We need you to LISTEN and WATCH! We need you to catch us when we fall. We need you to tell us it is time to go to the psychologist before it is too late. We need you to tell us it will be okay when we are in a flare. We need you to go to the store at midnight if we need something without complaint because our pain is out of control or the itching is so bad. Most of all, we just need you whether or not you understand at first or believe at first in what is happening to our bodies, because believe it or not, we don’t either. We are confused, scared, and we need someone to hold onto and we want it to be you.
Written by Deb Lundquist
September 24, 2017
Written by Deb Lundquist
June 4, 2017
Ever since you started feeling sick with Fibromyalgia, you have been afraid. Your family has been concerned. After the first ten days, when the doctor said he couldn’t find anything wrong with you, your family and friends started doubting you.
Is that the way it went for you?
Communication is the key!
If you feel like you have the achy kind of flu, but it goes on for more than 2 weeks, that is not normal. If things feel like gravity has changed, everything is heavier, your legs, your arms, your head, even your shoulders. That is not normal. If every sound is bothering you, smells are affecting your stomach in weird ways, your eyes are blurry, it hurts to be touched, things taste funny. That is not normal.
Write these things down. Put them on the Frig so your family can see them and have a round table so you can have a discussion about them with your family.
If your pain consists of several different kinds of pain; achy, lightening, stabbing, whatever, write it down. Put it on the Frig and talk to your family about it so they are in the know.
Communication is the key!
Then keep this list. Ask your doctor for a referral to a Rheumatologist. Fibromyalgia is under the umbrella of the Arthritis Association and so it makes sense that a Rheumatologist should treat us. Also, in an article I just read, it said that after Osteoarthritis, Fibromyalgia was the second most common disease treated by Rheumatologists.
Communication is the key!
Take some of your family members with you whenever you go to a doctor from now on, never go alone! Why? This will help them understand that you are not delusional! Also, they will be able to remember things that you won’t.
Bring notes, bring questions to every doctor’s appointment. Make sure they answer every one of your questions and if they won’t take the time, either say ‘excuse me, I’m not done’ or Fire them and get a new doctor who will. We have a site where you can look up doctors in your area. Take notes with the answers to your questions.
Have your family member make sure your questions are answered and that the doctor doesn’t leave until they are. After all, you are sick and they should be able to stand up for you.
Communication is Key!
You need to have tests done to be sure that you really have Fibromyalgia. There really is not a definitive test for the disease, but Fibromyalgia mimics so many other diseases that it would truly be sad if you ended up with a different disease, but were treated for Fibromyalgia for years because you didn’t have blood tests done.
There was a woman in our support group who was diagnosed with Fibromyalgia 15 years ago and has been suffering debilitating pain and other symptoms that could not seem to be treated. Finally, the doctor ran a bunch of tests on her a few weeks ago. She was just diagnosed with Lupus and is being treated for that. She feels so much better. Her diagnosis of Fibromyalgia has been dropped. For 15 years, she has suffered unnecessarily because she wasn’t tested in the beginning.
Demand the tests! They are so simple and if the doctor says he doesn’t have any way of running the tests, he is wrong. They are simply blood tests and any lab should be able to run them. Any hospital that has an MRI machine should be able to test for MS or Parkinson’s Disease.
Communication is Key!
What are the tests?
They are so easy. Simple blood tests. Checking for vitamin deficiencies, Thyroid disease (there are 6 markers), untreated Diabetes, Lyme’s disease, Lupus, Kidney’s and Liver if you have been taking too much Advil or Tylenol, Arthritis (several different kinds), and then now they are saying to check for virus’ as well. Then get an MRI to check for MS and Parkinson’s Disease.
Then when they do the 18-point test, if you are positive in 11 spots, and after a thorough physical examination, plus a consultation, if the tests above are negative, they can diagnose you with Fibromyalgia. If they don’t do the tests, they could be misdiagnosing you and how sad would that be!
Communication is Key!
Don’t stay isolated! I know you are in pain and you feel crummy. You know I have it too. I know what where you are coming from. But are you really going to let this disease win? Really? Don’t Let this beat you down!
Most people with this disease are Type A personalities! So, come on. I know a lot of you are in flares right now. I am so sorry! I hate flares! We need to find you a way to get you out of these flares without medication.
I don’t get them anymore, or I guess I should say, not very often. Sometimes, I will say I am going to take a Fibro day, which just means I want to sleep and play computer games. But, in actuality, it is just an excuse not to work. I tend to work 7 days a week, so I need to make an excuse to not work.
Communication is Key!
What do I do so that I don’t flare? I watch the weather and pay attention to where the storm fronts are and then I prepare for them. I watch for how high the wind is going to be because that and the cold is what really get to me! Everyone is different though. Different things cause flares for different people.
Then, I use holistic methods to take care of my Fibromyalgia. Yes, I am on some medications, but I was on 22 medications 18 years ago. Isn’t that awful! Two of those were OxyContin and Norco. I had RSD/CRPS at the time. I had everything else too, I just didn’t know it because RSD/CRPS is so horrible! I am now on 9 medications and they are for remaining symptomatology of the RSD/CRPS. I am totally off any kind of pain medication and I plan on never getting back on it as it can cause Fibromyalgia to get worse. I take no medication for Fibromyalgia or my Complex Chronic Migraines. I treat them both holistically. Actually, I treat everything that way.
What do I mean? If you have faith you will understand this part. Well, I pray and talk to God and Jesus a lot! It is amazing what happens when you put your trust in them. I ask for their guidance and they give it daily. I think as you get older you learn to trust them more and more. When I had active RSD and it got to be too much, I would pray for help because I just couldn’t take it anymore! Next thing I would know it would be 5 hours later and I would be waking up and my pain would be lessened. I have many other stories of how God would intervene in my life when RSD was so terrible before I learned how to handle it. The Trinity guide me now in everything in my life.
They led me to doTERRA Essential Oils first and I have to say, the oils go with me everywhere I go, car or plane! I put them in my carry-on and I have never been questioned about them. The wonderful thing about these oils are they come from the earth by way of plants that are untouched by any kind of chemical. They come from all over the world, even 3rd world countries, and with all these different countries growing these wonderful plants and distilling the oils, the company gives back to these countries ten-fold. The oils are tested, not just by the oil company, but by outside companies as well and every single batch of oil is tested from the beginning right down to each individual bottle. Since each drop of oil is pure oil with absolutely no synthetic in it and since our bodies also are not made with synthetics, our bodies accept the oils and they work together. The oils give the body what it is missing so that it can do what God intended the body to do. The oils do not heal or cure. They are not medicines in any way, but they help the body. There are oils for everything. The ancient Egyptians used essential oils and proof of this is found on their hieroglyphics. The ancient Chinese also used essential oils and proof of this is found in their ancient writings. Oils were used in Biblical times and are mentioned hundreds of times in the Bible. Jesus was anointed with oils. It is the only thing they had in those days for illnesses. However, like I said, they are not medications. Oils can be used aromatically, on your skin, and some can be taken internally. I use them all three ways to help my pain, my mood, my sleep, weight loss, and even my concentration. Oh, and did I say I use them for my migraines. I even use them on my face, my bath, to wash my hair, in our laundry, to clean our house, to wash our hands, oh gee just everything. We used them on my last grandbaby when he was born and he was fussy, when he wouldn’t go to sleep at night, when we discovered he had Celiac Disease and someone gave him some cereal at Sunday School… Did I say I love these oils! I don’t guarantee that they will work the same for everyone like they do for us, but … they even can stop gas and dare I say passing gas…. (wasn’t that a nice way of saying that?)
Then I was introduced to another product and I must say this one absolutely shocked me. I was really skeptical about this one, but I was given a free bottle to try and so I decided it wouldn’t hurt to try it since it was free. Right? Drinking just a little bit at a time of that first bottle gave me the gentlest body cleanse I have ever had. I ordered a case before I ran out of it. Next I noticed that my IBS was gone. That in itself was worth what I was paying for it. I decided I would increase the amount I was drinking and see what happened. Slowly my pain decreased bit by bit and I realized that I wasn’t using as much of doTERRA for pain (I still use it for a bunch of other stuff!) Then I was surprised to discover that I virtually didn’t have any pain at all! I kept drinking it, wondering what would happen next. About a week later, I woke up, jumped out of bed, got dressed, got ready for the day before my husband could wake me. My mind was completely clear! I had energy! I was happy! I loved life! No pain and I hadn’t had anything to drink yet! I went into the kitchen where he was and surprised him. I just smiled.
That day I accomplished so much! I even wrote a children’s book.
The next day was just the same.
So was the next and my husband said to me, ‘welcome back. You’ve been gone a long time. I’ve missed you so much! I’m glad you are back!’
The product isn’t some miracle drug. It isn’t a drug at all. It is a highly nutritious drink and it tastes like Mango juice. I have only been drinking it at the higher amount for 2 months and they say you get the full effect about 3 months, so I can’t wait to see where I am in another month. However, I am so happy where I am right now that if I stay where I am right now I am fine with it.
So now, I use both products because the products are so incredibly awesome!
If you are interested in either of these products you can contact me by either calling me at (815) 214-9443 or messaging me through the support group on Facebook – Your Fibromyalgia or continue on this site to the https://deblundquist.com/tutorial-limu-how-to-customer-order/
Spouses, Significant Others, Children & Family: Need Support
Written: Deb Lundquist
May 13, 2017
One day your loved one is happy, fun, and full of life. They are doing everything they usually do and life is fine.
Then in a blink of the eye, they are someone you don’t even know. They look the same, but all they do is lay around on the couch or in bed. They cry a lot. They don’t cook like they did before or at all. They ask you to do things they used to do and you don’t know why.
They don’t go to work anymore or if they do, they take a lot of sick days, or they come home, crying and go straight to bed. They are on a lot of medications that don’t seem to do anything. They forget things all the time, they say things funny like they can’t think of words or their words are really slurry like they are drunk. They don’t want to go anywhere and have fun. They keep cancelling events with their friends and you keep making excuses for them and it is embarrassing.
You don’t know what to do to help them, yourselves or your family. You are afraid of now and the future and you don’t know where to go for help or even if you want to help. Well if you are married, I want you to remember two things. This is the same person your fell in love with and the one you promised for better or worse, so you need to stick around and keep that promise.
However, you are the forgotten.
You are the ones who are the truly invisible. The ones who need the support the most because you are the ones who really feel that you are the only ones dealing with these issues.
Let’s correct that one misconception. You are NOT alone! There are millions of you! However, there isn’t a good support system for you. That is truly a shame and needs to be fixed.
We can address some problems here, however, and try to help you understand what is happening to your life and the life of your loved one. You haven’t lost your loved one. They are still in there. It is just they are stuck and don’t know how to get help themselves. They need your help.
1. First, it’s called Fibromyalgia and it changes everyone’s life forever. You have become a caregiver, not something you ever thought you would be until you were old, but there it is. Life isn’t always fair and never promised to be. You need to lean heavily on your faith if you have any.
2. At first, it seems never ending and like your life has taken a turn into hell. Hang in there and be strong for both of you. Research and talk about it together, because as frightened as you are, your spouse is even more frightened. You need to keep communication open and the two of you need to stay tight as a unit! I buried my head under the covers while my husband did the research. When he came into the bedroom to tell me what he discovered, I said, ‘all I want to know is, is it going to kill me?’ His answer was, ‘only if you let it.’ That was enough to get my attention. And no, it isn't going to kill you.
3. Second, your spouse needs a Team to help her/him to get through life with Fibromyalgia and you need to be the second person on that team. They are the first. In order to do that, you need to educate yourself, you need to get plenty of rest, you need to believe everything your spouse is saying about how they feel because they aren’t lying and you need understand that. That will lessen the stress between the two of you and will help with your communication and your research, even if what your spouse is saying sounds crazy. It isn’t. I asked my husband what advise he would give you and this is exactly what he said, ‘Listen, Listen, Listen. Even though your life is turned upside down, their life is worse and no matter what, you have no idea what they are really going through. So, listen and believe everything they say.’ Go to the Doctor with them so you can get a little bit of understanding of what is going on and if their Doctor isn’t listening to them, help them get the right kind of Doctor and one that will help them.
4. You need to find support for yourself. Positive support! This is extremely important for you! You cannot allow any negativity in your life or your spouses! It will tear apart your marriage! So, you need to educate your extended family and if they will not believe in what you are saying, don’t let them tear down your spouse! That will only cause more pain for both of you! You need to stand strong for the both of you, that includes parents, siblings, aunts, uncles and cousins. If you keep trying to educate them and they simply won’t listen, walk away. It isn’t worth the pain to keep trying to talk to a brick wall that isn’t going to listen.
5. You may need to start seeing a psychologist yourself to help you through these hard times. It can cause depression for you as well because you will go through a mourning process too. You have lost a part of your life and entered a new chapter and it isn’t one you ever envisioned. Your children may need this kind of help as well.
6. You need to educate your friends and your pastor because they are going to be part of your support system. Unfortunately, you’re going to lose some and that is going to be painful. However, again like I said in 4, you can’t allow negativity in your life or it will destroy your marriage. Those that stick around were your true friends anyway. The ones that leave, were never your true friends. You may even have to change churches. We did.
7. Sometimes, a lot of the time, your spouse is going to cancel on events you were going to do together. It is inconvenient, but can’t be helped. We never know even one hour to the next how we are going to feel. I know sometimes I would will feel great and the next, I would will feel so exhausted that I just wouldn't know if I could sit up any longer. It is incredibly disappointing to us when we need to cancel and we feel just awful when we see the look on your face when we tell you we can’t go yet again and you have to go by yourself. Sometimes you go by yourself, sometimes you stay home, sometimes we cry at your disappointment, but you need to understand that we can’t help it. Please don’t make us feel guilty or blame us. We know it can be very frustrating for you. You can make one of two choices; one is to stay home and spend quality time with your spouse. The other is to go and spend some quality time with family or friends, explaining to them that your spouse’s sickness didn’t allow her to come. Do not feel guilty. You need to have time away sometimes. You do need to have fun without feeling guilty. However, don’t be gone all the time, leaving your spouse alone constantly with no one at home.
8. We appreciate everything that you do for us even if we don’t tell you enough. You have had to changed roles and yet, you do it anyway and we want you to know that we recognize everything you do! We didn’t ask for this and we would rather be the one doing the things we are asking you to do. We try to do the things that we can, but we have no energy plus when we try to do things it increases our pain.
9. It is nice to date. It is fun and your spouse loves that too. If your spouse can’t leave the house, bring the date to your spouse. Set-up a nice table, if you have to by the bed or couch. Put a tablecloth, flowers and nice china on it. Play soft music and if you don’t want to cook, get takeout from a nice restaurant. Then after you eat, watch a movie together. Have a date every week or two to keep the romance and love alive.
10. Make sure you tell each other that you love each other all the time and tell them that you still think they are beautiful/handsome and that they are very important to you. At this point, they don’t think they have any meaning left in life and they don’t think they are lovable anymore.
11. Get your spouse out of the house as often as you can. Otherwise they get cabin fever and that deepens their depression which makes it even worse for you.
12. Do things around the house that you enjoy, like a hobby or something. We have a very large yard, 3 acres. My husband says he likes to mow because that gives him time alone to just veg and be by himself without interruption. He says it is his form of therapy, just him and God. My son does leather work.
Please make sure you get support for yourself and make sure your spouse knows you still love them and they will let you know they love you back. If you stay together as a unit, nothing can tear you apart!