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Living With Fibromyalgia - Online Support Group

New member struggling to accept reality


#1

I have had a time let me tell ya. I was diagnosed summer 2016, however I do believe it’s been about 5 years living with this. I lost my good paying job because my fatigue a brain fog was so bad I would miss days at a time from work. My family is not as supportive as I desire them to be. I went from being a supporter of others to retreating to my bedroom on a regular basis. They don’t get it. It really hurts when people say, “ You’re stronger than this. Push through. They don’t understand that the more I “push through” the more exhausted I become. I had to quit yet another job today because my stress levels and my fatigue just would not let me move forward. After being off work for 2 years i thought i was finally ready to get back out and try again. Boy was i wrong. I struggled daily for the this past month I’ve worked there. It was so many factors at the workplace that made things very difficult for me. The main 2 things were 1. We are in the summer months so the ac is cranked to its highest setting. No matter how many layers i wore, my 8 hours were spent shivering and trying to focus through that. 2. We only got a 30 minute break from the stress of scheduling patients and overworked coworkers. So i had to eat, regroup, make doctors appointments and give my self a pep talk all in 30 mins. This was very difficult for me. I did inform them that i had fibromyalgia but many people don’t care enough to research or ask more questions as to how you are affected by it. Even when you begin to explain they don’t understand and most time i get the feeling that they could care less. Moving on from that, at this point i feel extremely lonely. Hubby is saying you GOTTA try and do better. I need your support because we are drowning in debt. This makes my stress and pain WORSE. I am currently off all fibromyalgia maintenance meds. I was put on cymbalta shortly after being diagnosed and it completely ravished my life. At diagnosis I was 189lbs i stayed on cymbalta a little over a year and by the time i was taken off i was a whopping 106lbs. This fibromyalgia journey has been pure hell for me. The only way I’m am surviving is holding on to the mighty hand of our God and father. My faith is what keeps me strong. I am so happy i found this group. Reading over some of your stories makes me feel now that i am in good company because the people I’m surrounded by just don’t seem to understand.


#2

I’m so sorry you are having such a hard time. Fibromyalgia really sucks! I too had to stop working due to mine. I struggle everyday but my faith gets me through. This support group allows me to talk to others with the same issues and allows me to be frank with what I’m feeling.
Welcome to the group and know I will pray for you :pray:t2:


#3

hello Queen and welcome. I have had fibro 38 years, before anyone except a couple of doctors knew what it was. I started self-medicating with aspirin. BAD idea. anyway, i was disabled in 2004 very quickly with this diagnosis. some people wait a long time. mine was within a couple of weeks. What really caught my eye in your note was the air conditioning. I cant stand it. of course, i’m retired now, but set my air at 73 for my cat and company. that means i usually wear a fleece lined flannel shirt every day over my regular clothes. NO, “they” don’t understand. I had very scarey hallucinations with Cymbalta AND with Savella. gabapentin nauseated me so i could never reach the “right” dose.
Right now I am on a narcotic and anxiety med. I’m afraid to go to bed at night because i know morning brings stiffness, pain, using a cane, ice, meds, and being totally worthless for about 3 hours. I’ve also had financial problems - in the course of one year i had a divorce, my house foreclosed and i filed a bankruptcy… I simply could not work at a high enough paying job to pay my bills.
could you and husband go to a debt counselor? is there any type of work you could do at home? i wish I had a magic wand for all of us. :slight_smile: carolyn


#4

Thank you soooo much for all your support!


#5

Although it doesn’t change my situation, it’s so good to know I’m amongst people who have Walked where I am strolling now. May God keep you in the abundance of his love. Prayers up for you. I ask that God sends EXPEDIANT healing to all of us in Jesus name. Amen!


#6

Queen, it sounds like you have medical/insurance experience. May I suggest looking for a telephone based member services job in health care or prescription insurance? That way you’re not face-to-face but you’re making the most of your skill set. Maybe claims processing would be a good fit? Something to get you out of direct contact with people and out of smaller offices. Smaller offices always seem to be more stressful than larger employers/call centers/claims processing centers. Also, in all of things I’m suggesting you typically sit 8 hours a day, much easier than running back and forth around an office.

azurelle


#7

We often find that, unless you have this disease it is reeally hard for others to understand it…we look healthier than we are…

People mean well when they say you have to push, without any idea how hard that can be at times…

Am actually trying to push some right now, because i was in flares from weather so much, that i feel weakened.so i am trying to get my muscles strengthened some…by pushing i just mean moving more in general…not sitting as much…

Hope you can find some work that is less stressful for you

Do you use supplements?

Lj


#8

Same here with all the above Fibro issues. I can’t say enough good things about CBD and THC. It’s the only thing that really helps with most all of my Fibromyalgia symptoms (not fibro fog). Medical prescription brands are more expensive but some good CBD tinctures are available online. You can also cook with the CBD/THC. For sleeping at night the Hi-test (hybrid THC) medical works the best for me and the side effect of being hungry helps keep the weight on. I’ve gained back some weight after loosing 40 lbs.

I’ve had no success educating my friends or family on the extremes of Fibro. They can’t see it. Like you said we look normal. God forbid you tell them you use medical marijuana. I’ve found more support through these sites and local support groups. This disease takes so much from you.

Had to stop working and hardly pursued any of my old hobbies for years. Now I stopped caring about what others think. Sure I don’t make sense sometimes or forget, jerk with spasm’s in pain, fall or stumble and cry. I don’t worry about it anymore. Now I push myself to do things in moderation medicated and CBD/THC makes this possible.

I hope you find some comfort, as I do knowing I’m not alone. Try to find a local support group away from family or friends. You’ll find others who will listen and understand. Hope your family supports you.
L


#9

Thank you responding! Yes I am a Medical Marijuana patient as well. THC and cbd works until it doesn’t. Also makes my brain fog worse so I try not to use too much THC. Prayers up for you. May God continue to strengthen you!


#10

Dear QueenDeeCoping and everyone else,

I know, it is so hard. Oddly, I think is is slightly easier lately since the graphic lyrica commercials showing a body full of red, inflamed nerves. It takes a commercial to partially educate some people! (Well, it makes sense I guess, where else are people going to learn about FM?)

I was working a high paid job, stopped working 5 years ago due to depression and fatigue, a couple months later I found out I had lymphoma, had chemo, then it was after the chemo, that my body pain and fatigue became worse/more pervasive and I finally realized I had FM, and only just got the diagnosis a week ago. It has been a rough 5 years. Now if I pet my cats too much or work on the computer too much, or walk or do anything too much (which isn’t much), I have more pain. I am fortunate I no longer have to work, because I don’t think I could do a regular even part time job due to the fatigue , brain fog and chronic pain.

So I really feel for you! I’m a recent widow and sort of new to this county so don’t have much support, but it seems like you may have even less support than I do. No matter how many times they watch the commercial, people still don’t seem to understand how debilitating FM can be , in so many ways. And that includes my primary doctor and my psychiatrist of 14 years: I have to educate them all the time, and even then, they seem to doubt. I had to travel 7 hours away to finally get the diagnosis! Anyway, I’m glad to hear you use thc/cbd, so do I , and along with lyrica, cannabis has helped me a lot. I know it is not the whole answer. I recommend you and everyone check out the recent string with “LDN: low dose naltrexone” in the title. This seems to be a fairly new med used for FM pain and sleep problems and I think it is starting to work for me (I’ve been on it for a week). Not that unfortunately, anything is the whole answer. Oh yes, I have started exercising (in an arthritis class with mostly seniors) in a warm pool, which is the only form of exercise that hasn’t caused me to respond with a lot more pain. Dionna, all the best to you. Take care!


#11

Thank you for responding. Today was a horrible day. My depression is really bad. I have 0 income and all my husbands money is barely covering the bills. After scraping up what we could to get groceries the kids left them in the hot Car overnight and it was close to 100 degrees today and yesterday. It is really a sad situation. I became so overwhelmed with hopelessness that i prepares myself to go to our local riverwalk and jump over. Only thing that stopped me was on my way, I came across a driver on the road who had suffered a medical emergency. No one stopped to help but me. I had no phone because i left everything behind at home on purpose. I stayed with him till Ems and his family arrived. and everyone kept praising me saying I was an angel. All I could do was cry because I knew what I had originally set out to do. Even though the whole situation is sad God showed me today that I am needed. It was enough hope to get me to tomorrow.


#12

Dear Queen Dee Coping,

Oh, I am so sorry to hear your financial situation is so hard not to mention your fibromyalgia symptoms and depression! Oh my gosh, I have been there in terms of depression, despair, hopelessness and suicidality and it is hard to know what to say, other that at least in a way, I understand how bad you’re feeling, and I’m so glad you didn’t harm yourself yet found it within yourself instead to help another. That must be a gift, especially given how bad you’ve been feeling.

Please don’t hurt yourself. After my husband died suddenly a year ago (among other things, he was my caregiver), I felt so bad, mentally and physically, I wanted to die. Some people told me to hold on, that life would eventually get better, but at the time I didn’t see how it could be true. But eventually, and it may take a day or a month or a year, things do get better and more tolerable. It starts with a minute, or half an hour that you feel better, or maybe even a whole day. Things will improve, it may be slowly, but they will.

I am so glad you have your faith in God. My spirituality helps me also, though I don’t belong to a church. I’m so glad God gave you a message today, that even as bad as you may sometimes feel, that you can provide warmth and light to another.

So when you feel bad like that again, I hope you can call a friend or family member, or therapist. If you don’t have a therapist maybe you can find one. I have a psychiatrist who will talk to me briefly on the phone when I have a crisis. It helps. And I hope this group helps too!

I think if you can gradually figure out ways, with help of friends and/or family of course, to make your financial situation a bit better, and to get some treatment for your FM. It is so hard to feel good when you’re always in pain, I know. One thing I forgot to say in my last post was I take a lot of tylenol. The pain doctors said it was okay. I take 2 extra strength tylenol 3 or 4 times a day for pain, and amazingly, it helps a great deal. I couldn’t tolerate the pain with cannabis or lyrica alone. Acetaminophen is cheap, and it really helps me. I think it will help you too. If not that, then do you use motrin or one of those other meds like naprosyn (I can’t take them as they hurt my stomach)? They are anti inflammatories. I think they can be very effective with FM pain too.

Perhaps a counselor or even a social worker at your doctor’s office can help convince your husband and family how debilitated and depressed you are. They need to know they need to come through for you, not just for a month or 2, but long term. Have you applied for disability? Sorry, I don’t see your original post since I’m responding to you via my email. I don’t know what I’d do if I wasn’t on disability.

Your life is very hard right now, but that doesn’t mean it won’t get better. I hope what I’ve said provides a small amount of help. I wish you well. Please come back and keep sharing, keep getting support! You definitely deserve it, and need it right now!

Love and light,

Jean

Jean King
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#13

Jean, god bless you. I was in therapy but my copays even though $25 I could no longer afford. I was in therapy twice a week. My therapist was nice enough to let me get away without paying until it reached $600. I know how insurance works because I’ve been in the medical field forever. I know that this was affecting her business so she had to dc me. That was in April. I applied for disability on may of 17 the Denied me in feb of 18 and I immediately appealed. The disability lawyer I hired was a shame. No help just took my case and never counseled me on how to proceed. I finally fired him last week. I feel so stupid but I was not aware how disability works. I have a new attorney now and they’ve done more in one week that he has in a year. Hopefully I hear from them soon with a hearing date. I feel a little more prepared now with the new attorney. Just out of money out of choices. No real support because I’ve been the sting one all my life. People closest just DONT UNDERSTAND that I’m doing my best. I go to church 3x a week when I have money for gas. It’s the only thing keeping me alive. I wanted to attend excelled bible class. I told my husband and he says. How funny is it that you have energy for church but not for your family? That really hurt me bad.


#14

Dear Queen Dee,

It really does sound to me that in spite of all the pain (both mental and physical) in your life, you ***are ***coping, Queen Dee! Wow, sounds like your husband just totally doesn’t understand or empathize with your FM and emotional suffering. I think it is great that you are going to your church often, like you said, it helps you tolerate all the pain, and probably inspires you too.

I’m really glad you got another attorney and he seems to be stepping up your disability appeal. It seems like there is a lot of hope, at least at the disability end, but now it is a waiting game. But if you get disability, you will have a lump sum back-pay amount, right, dating from the beginning of your disability? (that happens in California, where I live). I hope you get disability soon, which should relieve some of the financial burden. Doesn’t your husband work? Is he disabled too? A bummer he is not more supportive, both financially and emotionally.

Anyway, I hope you hang in there! I can’t remember from your first post, do you have kids? Mother, father, siblings? But even if they can’t help, how about church members? Are you friendly with any of them? Do they know about your FM? I went to a Methodist church for a bit after my husband passed, and I remember someone announcing to the congregation that one member who no longer attended, had finally been diagnosed with fibromyalgia. There seemed to be some understanding there that FM is a big illness or burden. I always thought church members often volunteer to help or support people who are struggling with illness or adversity. Are there any support groups you could go to at your church?

I’ll be sending you positive thoughts and hope you continue to share with me and other members of this forum. Take good care!

Jean

Jean King
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#15

Queen Dee, I’m sorry to hear of your financial troubles and little support from your husband. Depression is a hard thing to combat but don’t give up. God gave you a big sign that you are strong and you will get through this. Are you taking anything to help with the depression? If seeing a doctor is a problem, go to the ER and tell them that you are having thoughts of ending your life and you need help.
When I need to feel better, I ran a hot bath and put in Epsom salts and soak for an hour. I pray to God asking for His help. I practice deep breathing and listen to some soothing music. You could turn out the light and light a candle to make it like a spa experience.
As for your money troubles, can you apply for SNAP? It would help with getting food for the family so you can use the money for other bills. Or perhaps there is a Community Food Bank In your area where you can go?
I know it’s really hard to do all of this when you are in pain but take it in small steps. We are here to give you support.


#16

I think sometimes we need to be able to get out and do something we love for ourselves… so maybe church is that for you…i got in a bad place this past winter and began some myo massage and acupuncture…since then i found out i was on a bad medication that is recalled, so am feeling a little less fatigue since that is out of my system…

Lj


#17

I know what you mean about struggling to accept reality. I am now retired and had big plans of traveling, maybe buying a small house, having a dog and walking daily. Now it’s all I can do to get through a day. I was on Norco (narcotic) for pain taking 10 pills per day. My doctor finally said I don’t know what to do, you need a pain specialist. Well, HE cut me down to 4 pills a day, prescribed a TENS unit (gives you little shocks periodically to distract you) and sent me to physical therapy. That was too painful, so I quit. Now i have the added worry of my thyroid gland not working, so have swelling in feet and legs, but on a low dose of meds for that. I too just have trouble accepting that this is ALWAYS going to be my life. once in a great while I have a day with a low pain level which is such a blessing. I wish it could be more often. This is a good forum to come to and rant and get ideas that help us. I hope your day today was better. Carolyn