Acceptance vs. Rejection

Support
1

Hello,


I'm new to this site. I'll be 27 years old this month, and yet I often feel like my body is that of an 80 year old. The chronic fatigue, stiffness, pain and need to rest throughout the day is very hard to cope with. I honestly don't know how I make it through each day sometimes. I have a full time job and work 40+ hours per week, so I don't have the ability to rest throughout the day, except on the weekends; but I don't want to rest on the weekends! I want to go out, have fun, or at least have the energy to get stuff around the house done. Sometimes the thought of even cooking dinner for my husband and I is difficult because I have nothing left to give at the end of the day. I want to go to bed at 7:30pm, to me that is ridiculous for someone my age. I'm still in the phase of trying to "beat" my illness and overcome the obstacles. I think to myself, "I can win, you (Fibro) aren't going to get the best of me"; but fighting it makes me more tired. I'm trying to move into a place of acceptance and peace. How can I be at peace with something that I hate so much? I feel like nobody outside of my husband and my family understands what I go through because I "dont' look sick". How do you combat the stigma and negative attitudes associated with Fibromyalgia? I started a new job in December 2013 and have missed days due to this illness. I haven't had the courage to tell my boss that I have Fibromyalgia because I feel like it will place a label on me. I've gotten positive feedback and my employer is very satisfied with the work I do on a daily basis; but I don't want to be labeled as "the girl with Fibromyalgia".

Last night, I wanted to go the hospital because I was exhausted and in pain; but I knew they wouldn't do anything for me. I've been down that road before. As soon as you say the term "Fibromyalgia" the ER or hospital gives you this look like, "Oh, another one of these people". They give me an extra strength Tylenol and send me on my way. I already have that at home from my PCP and now I'm stuck with an $800 bill because my insurance didn't cover it all.

Sara

2

Sara, welcome to the group. I’m so glad you found us and hope you find the encouragement that you need to carry on. Fighting is tough. I’ve been doing it for the last few years, and can sympathize with you on that one. My meds have greatly helped me keep going. It took some time to find a good balance, but now that I have it life is much easier. I still have a few bad days, but knowing that I will have good day to come is a great comfort.

It sounds like you’re not getting the care you need from your PCP. Am I interpreting that correctly? Is there any way you could find another doc? There are meds out there that can really help you. Combine that with a good PT plan, & a good doc and you could get some of your life back. Keep fighting to get good care. You’re paying for it, and you deserve to be treated with dignity and respect.

How do I deal with the stigma? I’m just lucky. My husband and mom are awesome and super supportive. Of course they don’t “know” exactly what it’s like, but they take good care of me. However, there are still idiots around. I work I healthcare and there are still lots of docs that don’t “believe” in FMS. I do my best to enlighten others and change their minds. There are a couple of studies by reputable groups that I pull up any time there are doubters. It’s hard to educate others, but if your family will listen, then do your best to open their minds. I made my husband read all sorts of patient perspective articles early on. I even made him read the “Spoon Theory”! Maybe all that reading helped? Dealing with doc you don’t know can be really hard. It helps if you have an advocate with you, but you are your own best advocate. I have had to tell docs that I am a person with a real condition, and I deserve to be treated accordingly. Then, I found a good treatment team. Now, I have an “fibro emergency kit”. It contains rescue meds that are pre-portioned into doses, so my hubs can grab them for me without any questions. I also know what works for the pain and use those tools to help me get through it until I can see my own doc. No more ERs or urgent care clinics.

Once you get the right treatment plan, work won’t seem like such a hurdle everyday. I remember days where I’d sit by the shower, crying in my bathrobe because I didn’t know if I could do it that day. But, it got better. One thing you may try is getting FMLA protection. It will cover 12 wks of leave. You can use vacation, or short-term disability to cover your time off or take it unpaid. The really nice thing is that you don’t have to discuss any specifics with your boss. You can just call in and say you’re sick; no questions asked. You need to have been at your job for at least a year before you can apply and you’ll have to get your doc to fill out a section and sign off. This is another reason to make sure you have a good doc on your team.

I’m sorry that you’re struggling so much right now. It really can be better than this, so don’t lose hope. Don’t feel guilty about taking care of yourself. If you need anything, just ask. I’m happy to help, if I can. Take care - Grumpy

3

Hi Sara

Have you seen a rhuematoligist to rule out other things? When I worked full time I often used my crock pot so supper was ready when I got home. I worked with a wonderful group of people so I really didn't have a problem at work. With other people I was honest and if they asked i told them I had fibro and most asked questions that I answered.

4

Welcome, Sara! I am so glad that you joined this site. I am relatively new (within 2014) but I use this site to help me cope and to vent and to ask questions to learn about this illness and what it can mean in day to day life. Having said that, I am 30 years your senior, so I do feel horrible for you that you have this at your young age. I have 2 daughters close to your age (28 & 26) and they are so busy all the time that I can’t imagine either of them having to deal with fibro and do all that they do.

I agree with all the other responders - keep looking for a good doc who really listens to what you say. I have been blessed with a new General Practitioner who actively listens and asks questions that are relevant and then does what she can to help me. She is adjusting the amount of one drug and adding a prescription sleep aid to help with all the waking up during the night that just exhausts me. There really are docs out there who get it and want to help their patients, but you have to make effort to look for them. And, yes, docs do work for us, so if you aren’t getting what you need from them, it is perfectly okay to fire that one and look for another!

All I really wanted to do was to welcome you to the site. I have a problem with being a bit verbose (in writing or in person) as others here could tell you! LOL! But, please, use the site to help you cope, vent and learn. Sometimes you read something here that makes you want to ask your doctor about what you may not have thought of on your own. We also like to hear about GOOD things that happen, too, so let us know about them as well. Blessings, Kiddo, and welcome!

5

I was diagnosed last November. I think that the first thing is to not be too hard on yourself you have to understand that you are not the person that you were before. Google and read the “spoon theory” this helped me in explaining to my husband and to clearly understand myself how I have to choose what to do on a daily basis. You have to decide what is the most important thing for you to get done and let everything else go. Next realize it is not about getting better but about taking care of yourself. I was just trying to feel better and getting frustrated that my body was not cooperating. I tried the medications that my Doctor suggested I was taking Cymbalta, Baclofen, Prozac and Wellbutrin, all of them had horrible side effects and then just created new problems for me. It was not worth it for the little bit of relief that you get from the medications. The truth is there is not a cure and I have found that choosing to embrace the changes in my body and listening to what it needs has helped me. I rarely take any traditional pain medication and this seems to work better for me. I am not sure what state you are in but medical marijuana has helped me but I also have osteoarthritis so it may not work for or be legal in your state. I also do Yoga, Acupuncture, meditation and take coconut oil, apple cider vinegar, kombucha, magnesium and St John’s wart. I do occasionally take Norco in order to get a good nights sleep if I have to. So maintenance is what has worked for me.

6

Sara,

Like you, I have said that I feel like my body is that of an eighty-year old. Then I realized that I was probably insultuing people in their 80's (wait for raucous laughter to end). You mentioned you are coming up on 27 but I didn't see how long you've been dealing with fibromyalgia. For me, it started when I was just 23 - MyGod! I just realized that is half of my lifetime ('m so old!!!).. The other difference is that I'm a guy so you might want to factor that into your interpretation of my comments to you.

You may have noticed my wording when mentioning how long you've been DEALING with FM. You may have worded it differently, possibly something like SUFFERING from FM. The difference is all the difference (wait for confusing look to go away). What I mean is that you view Fibro as something you must FIGHT and DEFEAT. You are dealing with an INVISBLE ILLNESS and worried how others might see you. You are interpreting what health care workers are thinking about the diagnosis that was given to you. So right here, we can make your life easier if you stop caring wat others think (even your employers) and stop looking at geting through the day as a battle and start accepting a few things as fact:

  • Nobody know how you get Fibro but millions of Americans have it and 90% are women.
  • There is no test for Fibro. It is a diagnosis of exclusion.
  • There is no universal treatment for fibro. The most common medications prescribed are Cymbalta and Lyrica. People with FM find they work ok with some but it is not a magic pill. There is no magic pill. Many people find moist heat and massage are as effective as any pill you are going to take.
  • Last, bad news/good news. There is no cure for fibro (that's the bad news). The good news is that it is not progressive, meaning the worst it has been is as bad as it ever will be (unless you've only had it for a month. In that case, things are going to get bad!). That means you've seen the worst that FM has to offer and you are still kickig, still breathing. If it gets bad again (and it will), you'll have more tools in your tool chest to know how to deal with it!

At this point, you are probably asking yourself if the guy writing this is on 'shrooms or something. The answer is, surprisingly, no. In fact, I'm here to give you the quickest way to that place you are seeking - the one with acceptance and peace. Step one - you are in pain, right? You are in pain and exhausted when you get home from work, right? Unless your husband is in a coma, he needs to turn off the TV or move it in the kitchen so HE CAN MAKE DINNER FOR YOU! I was with my wife for twenty-four years and unless I was physically unable (I've had a number of spinal surgeries through the years), I can probably count on two hands the number of times when I was able to make dinner but she did instead. I should note that unless she is baking (or following a recipe), she is not a terribly confident cook. Then again, how confident do you need to be to boil salted water, drop in some pasta, cook until al dente while nuking some canned marinara sauce? I have to admit that cooking is my thing. I suck at cleaning up after but that is another discussion. I loved cooking for my wife and daughter and trying new things like Beef Wellington or something I created with spongy eggplants and turnip greens and whatever staples I had on hand. The truth is I have over three hundred cookbooks but have never once followed a recipe (obviously, I do not bake).

So here are the essentials necessary to get you on the way to acceptance and peace.

  • Do you like to laugh? I know this sounds stupid especially as my first piece of advice, but I have spent too much of my life with a pain score in the 8 - 9+ range, a level I would score foracute pain, like a burn or hammering my thumb instead of the nail, In fact, I just spend two and a half years at that level. When things were at their worst, I had to remind myself that I love to laugh. For me, the classic silent comedies with Buster Keatoin or Harold Lloyd get me everytime. Bill Cosby, George Carlin, Bob Newhart, Sam Kinison, Eddie Murphy and Richard Pryor get me crying so good. Ask your husband to help remind you that you need to laugh. From now until you find peace, that is his job - dinner and laughter.
  • Educate Yourself - The More you Know, the easier FM will be and the less it will bother you. I would contact NIH in Bethesda Md. The exact department is called NIAMS. This link is their wensite: http://www.niams.nih.gov/ . Request an information packet on Fibromyalgia. There is no charge, you should get it in about a week and the information is current and reliable. Read everything they send you and use the footnotes are a way of fining other sources. Yes, I know it sounds like work but the alternative is fighting a losing battle with a longer road towards finding peace. .
  • Exercise - Ok, perhaps exercise something you work up to. For now, make sure that you get as much movement as possible. The bottom line is stop moving the parts you don't care about. Think of movement this way - like a sponge. When you do not move, your body is like a DRY sponge. Have you ever tried to bend a dry sponge? When you stretch and strat getting that blood pumping, you WET THE SPONGE. Your job every time you feel stiff and sore is to WET THE SPNGE. And remember, !!movement is ESSENTIAL!!
  • GET TO SLEEP - Another crucial step is your body's own regenrative process. Some peoplewith Fibro have trouble getting or staying asleep. If you are sleeping well now, keep doing what you are doing. If not, see what your insurance company covers in terms of seeing a sleep specialist like a sleep neurologist. Also, will they cover a sleep study? Many people with long-term chronic illnesses gain weight. By gaining weight, it is likely you will acquire sleep apnea which makes it harder to get a restful night of sleep. Just like I'm telling my daughter who is in her freshman year in college, SLEEP IS ESSENTIAL!
  • Make sure you are seeing the correct doctor (usually a rheumatologist for FM).
  • If it helps and you have the insurance, a good therapist can help you process evrything you are experiencing.
  • Connect with others that have FM. affirmation is essential. Reaching out like you did here is a great first step but try and see if there are local support group for people with chronic pain or FM in particular. Over the internet is great, but seeing people face to face really works as well.
  • Learn the parameters of pain. Once you know FM is not progressive you will accept your limitations and strive to over achieve.
  • If at all possible, I would avoid narcotics for long term use with FM. I personallythink a good muscle relaxer (like soma or flexiril) will keep your body in a state where you can move about ith less pain.

Sara, the medication I take so I can fall and stay asleep is kicking in so let me say one last thing before I fall asleep and hold the zzzzzz key down. Treating Fibro is more about common sense than most newbies realize. Your husband should be drawing you baths with nice smelling candles (the moist heat is good for you) followed up by a back and neck massage with a dollop of body oil to lesson the friction. This will help you relax and if te massage is in the bedroom then you'll have gotton a great head start to a phenominal night of passion...ate dreams and a good night of sleep (Moderator: Please note that I skirted the line on rule #4 buta the last minute, I stepped away from the dark side of the force).

I am truly falling asleep here. I'm available if I can help at all. Best of luck to you. zzzzzzzzzzzzzzzzzzzzzzzzzzz

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Booo! For your ER! Some just don't get it. Call your doc ASAP and let them know what happened to you. How you were treated and what you were given for pain. If you haven't do so already, complain to the Hospital board itself. If you don' know how, ask you doctor's office. Good luck.

8

Thank you for all the responses and feedback! Hearing your stories and advice is starting to bring hope and strength back for me. I have been in a very dark place lately and felt very depressed and hopeless about coping with this illness. Along with Fibro, I have a seconday dx of Ankylosing Spondalytis Arthritis. Your kind words and thoughtful responses truly mean so much to me.

I have decided to seek counseling and have my first appointment on 10/28/2014 with an MD. He has experience in treating people suffering from FM and other co-occurring diagnoses. I'm also hoping he can help me with the emotional struggles. I have a wonderful, compassionate PCP who actively listens to my struggles and provides the best care he can, but I think he has reached the limit of what he can do for me. I'm hoping the counselor can adjust my medications to better fit my busy lifestyle and needs. One member also suggested I try B12 shots that might help with my energy. I'm definitely going to look into this. What does COQ10 seem to help with the most? I tried that in the past, but didnt' really notice a difference. Regular chiropractic visits and massage are helpful as well. Bubble baths are my salvation. I run the water very hot and it seems to "shock and relax" my muscles at the same time.

As mentioned, it is very difficult to realize I am not the person I once was because of this. I often find myself daydreaming back to the times when I was full of energy and had no pain. It is hard to accept defeat; but I'm trying not look at it that way. I'm trying to turn the word defeat into a more positive word that expresses what I'm going through but doesn't admit that I feel like I'm losing the battle.

Through all the specialists and medical providers, I have been on so many different medications throughout this journey, I have lost count and name. I am on a 5 medications right now that help with a range of problems like anxiety, pain and fatigue. My anxiety has been through the roof lately. It often keeps me awake. I feel the main reason I experience anxiety is because I dread the coming day with feeling so exhausted. I lay awake at night wondering, will I be able to get through the day tomorrow without feeling completely exhausted? Will I feel grumpy/irritable and interact with people that way? I feel like I have to put on this brave front because I don't want people to see it (mostly work people). My husband, mom and step-dad are so supportive and I feel like I can truly be myself around them. They know me, how this illness affects me and if I need to go lay down to take a nap, they are okay with that.

As far as cooking goes, cooking is my salvation. I love to cook dinner and it gets my mind off of the stress and daily grind; but it can be challenging when I'm exhausted. My husband (god bless him) would burn water if that were possible ; ) He cannot cook, but he does all of the clean up. If I am feeling too tired, my hubby will grab something to go on the way home or order in so I don't have to cook.

In regards to sleep, I could sleep forever! But, I've found if I sleep too long, I feel more foggy. I've found that staying up a little later (even though it's difficult) and getting 8-9 hours of sleep makes it less difficult to get up in the morning.

Cheers to continuing to keep on keeping on!

Sara

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Yes, the eye roll or the blank, dismissive expression they give you is infuriating. Last time I went, they gave me an anti-inflammatory pill. I had a bottle of those at home and my insurance didn't cover the "physicians bill" so I just recently paid it off. I just want to scream to the ER doctor "my pain is real and if you had to deal with what I do on a daily basis, you would understand!" But I've learned my lesson. That is why Im seeking alternative treatment options through counseling, medication management and my PCP. Unfortunately, I go to Multicare, which is the health organization in Western Washington and Fibromyalgia is in my medical chart, so they see it even if I don't mention it. Thanks for the reply!

Sara

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I feel your pain. I am 20 years old and feel older than my parents who complain about aches and pains. They tell me how much they hurt and think I have no right to complain. I've been to the ER three times in the last year with no relief. The doctors gave me liquid Ibuprofen and didn't care that I still hurt. Told me each time to go home. No one understands us better than us. I would talk to your Insurance company or Social Security. Your insurance think it is NOT AN EMERGENCY due to it only being chronic pain. NOT A LIFE OR DEATH SITUATION. My father explained this to me because my insurance did not want to cover it. I had to fight that I was in so much pain I thought I was going to die, or dying could be the outcome for relief. Insurance companies are skeptical due to fraud so it is hard on us since not many understand fibro yet. Keep Fighting. Don't give up. Right now I am talking to Vocational Rehabilitation for support. See if they are in your area. They could help! Don't give in to society, and if you need a friend, I'm here for you!

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Thanks Suzanne! : ) I am definitely looking to connect and make friends with individuals who understand our daily struggles and challenges. I completely connect with everything you stated. I feel like my mom has more energy than I do, and I'll soon only be 27. I went to the ER in August and September 2013 and they did absolutely nothing for me. They gave me an anti-inflammatory and an extra strength Tylenol...I have those type of meds at home..I was looking for HELP! I have contemplated going to the ER again in the past few months because sometimes the pain is so bad, I just can't take it; but then I realize they will do nothing for me and I'll be stuck with the bill (very large bills). I just recently paid the bills off for the ER visits last year. I started taking Iron and Vitamin D, and waiting for my COQ10 and B12 in the mail. I actually feel a tiny bit better today regarding my energy level with the Vitamin D and Iron. It might just be in my head, but anything that works! : ) I actually found myself singing in the car on the way to work and I haven't done that in months...I'm usually a zombie throughout the morning and sometimes throughout the day because I'm so exhausted.

Looking forward to getting to know you,

Sara

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The key to dealing with the ER, is to avoid it at all costs by getting good management for your symptoms through your care team. It's great that you have a doc that listens (count yourself lucky!). The B12 shots may help, and there are new meds coming out all the time that may hold the key to giving FMS patients their lives back. Having a care team that is "up" on advancements is so important. Work with your doc to create a kit that you can use when you are in bad shape. It is so much better to manage things in the comfort of your own home than in an ER waiting room. Make sure you include your bubble baths!

The B12 may very well help your energy levels. Anytime that you feel this low, it's time to check in with the doc. We should be able to get to a tolerable baseline with the right care. If you aren't there, then its definitely time for some changes. If you have already tried CoQ10 and it didn't work, save your money. Sometimes people feel like they get results from supplements and some don't. It's easy to get sucked in to buying all sorts of supplements and herbals. Make sure that you are careful and discuss everything with your doc first.

You may want to get someone to talk to about the anxiety. It can be so debilitating. There are a lot of emotions that go with having a chronic illness and it is difficult to control all on your own. Find someone who can help you with it. We all need time to grieve, accept, learn to cope and learn to live.

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Sara I am 75 and feel like 100 or more every day. I am a very active man or should I say I was until I had an infection and the doctor gave me massive amounts of antibiotics for almost two years. That was almost 8 years ago. That was the start of the fibromyalgia. Then an autoimmune disease started destroying my joints ending in two total knee replacements this year. The operations took everything to a new level and now I have problems with even the slightest exertion such as mild physical therapy. But I have finally learned a lesson that you may want to think seriously about. accept the fact that you have fibromyalgia amd unless your doctor has eliminated Lupus, fatigue syndrome etc that is what you are stuck with and have no choice but to live with it. However know your limitations since each one of us is different. Make absolutely sure that you are getting everything you can feom your doctor. If you have severe pain in your muscles and joints then try the accepted FDA meds Lyrica, Savella etc. if those do not work for you and the Mayo Clinic says that it works for only 18% of us, me excluded, then do not be afraid to ask your doctor for pain medication and get lots of rest. Above all do not feel that you have to feel you need to hide your problem. It is an illness that is now widely accepted and understood. And good luck. We all have the strength to cope with this.

14

I read your post two days ago on my phone, and wanted to say that I feel the same way as you do. I have been fighting my diagnosis for the past two years-which is exactly how long I have known about it. The more I fight, the more pain I am in. I hate it. I hate everything about it. Fortunately, I have found a therapist who is helping me work through it. I know it is a slow process, but I really wish there was some kind of boot camp, or week long retreat I could go to-more for my family and less for me. No, that's not true, more for me because I can't stand everything.

I feel so incredibly overwhelmed by daily life that sometimes I just sit on the couch and stare. I just don't know where to start and when I do start, I don't want to admit to having limitations. Ugh. Where is that damn fairy godmother? (kidding).

15

Hi jmhaag,

I can definitely relate to everything you are saying. I do wish there was some type of retreat too that my family and I could go to together to learn how to cope and support eachother through this. My husband is very supportive, but I hate to burden him sometimes with everything that comes with this illness. He never makes me feel like I burden him, but I don't want to cause him unneccessary stress. Honestly, there is no fairy godmother and no magic fix for this diagnosis; I've learned that through many different medications (and side effects of the medication). I'm also working with a therapist to try and accept/work through this rather than reject it. Rejecting it does cause more pain because it causes additional stress. I'm here if you want to talk/vent/need support.

Sara