New-Exhausted, hurting, angry and feeling pathetic

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Samij226
New Member


Date Joined Oct 2017
Total Posts : 3
   Posted 10/25/2017 11:01 AM (GMT -7)   
Hello, I am a 30 yr old mother of 4, fulltime mom and student.

I am going to go back a bit, as to explain my situation and maybe one of you have some words of wisdom or compassion that may help. I am lost.

I have suffered from pain for many years. It started in my neck and shoulder. The left side of my face would go numb or pins and needles at times and I lacked the ability to concentrate at times. I went to many Doctors, was told it was in my head, was told that even though my Lymes test was negative that I had Lymes and underwent a treatment plan that I swear if my husband hadn't made me stop I would have died and was eventually diagnosed with Thoracic outlet syndrome (TOS) and they removed my first rib. However, the pain remained after the surgery and I also gained new problems. Like, a part of my shoulder that when touched felt like I was being burnt, or severe pain throughout my left ribcage muscles. I tackled physical therapy for a year, my motto became "Fake it, till you make it". I cannot do a lot of things with my left arm, I didn't realize that the first rib had important muscles that they would cut and leave them without an anchor. I accepted that as my life and just tailored it to meet my physical limits.

Then, in April I woke up with severe pain in my legs, I knew instantly that it was nerve pain because it was just like my arm, but the arm nerve pain came gradually, this leg pain came in without warning. It was terrible to sleep, and when I did I would have dreams of a shark eating my leg or being amputated I even had one of a car accident where metal pierced it and waking up in tears. I went to the Doctor and was immediately put on Gabapentin which helped. He first thought I pinch the nerve in that big but muscle, he gave me 3 weeks to try and work it out on my own with exercises he gave me because he understood my history with physical therapy. After those 3 weeks were up I was in physical therapy for 4 months until he pulled me out because it wasn't making a difference. I had MRI's on my neck, back, and brain to check for pinched nerves, MS, and a bunch of other things. I had all the blood tests for autoimmune diseases and that vein one that causes clots, I can't even recall all the tests.
Meanwhile, everything just kept getting worse. Previously I thought I knew what fatigued was. But that was nothing compared to the monster that came into my life. I hate that I now know the full extent of fatigue. My husband came with me to my last appointment, because I was developing new symptoms over time and forgetting to mention them. It turned out his presence was good yet bad in a way. I talked about how my quality of life was slipping to no life at all I broke down because I now have zero control over my emotions. My husband provided information from his point of view and next thing I know I'm being poked all over while my husband corrects my answers because my pride makes me play things down. My current Doctor, whom I trust, finishes hurting me and tells me he wants me to try Cymbalta because he thinks its possible I have fibromyalgia. I;m getting good at spelling that since I've done nothing but Google it for two weeks since he said it and raging because I don't want the diagnoses (no offnse)

My insurance company would rather have me on painkillers than Cymbalta, so I haven't gotten to try it. My Doctor is having a difficult time finding a rheumatologist to send me to because he wants to be thorough.

Meanwhile, I feel like this is life or death. On most days I manage to get my children to school, get myself to school and that's about it. I rely on them to do housework and my husband who works 50+ hours to do laundry and cook. I feel useless most days. I go to dark places. Sometimes I think what if I don't turn and instead just run off the road. I could never harm my family by committing suicide, but the thoughts are there because I feel so my suffering.

I think warring with the fact that I don't want this diagnosis is only making things worse. I am trying to manage my stress, but it's hard when I feel my hope and dreams crumbling away.

I had planned to drop out of school on Monday. Last Wednesday and Thursday I woke as usual with full body muscle pain and fatigue, but it was at an all new level. I sat on the floor watching my kids get on the bus through the window and that alone took so much out of me. My daughter helped make all their lunches and help the little ones get ready. I could do nothing but cry and be angry. Once they left I spent hours sitting on the floor of my shower, my sensitive skin that has spread to my whole back and down my left thigh burning as I tried to ease my muscles. I missed all my classes.

Monday, I went to class, it was not a good day but I was so thankful it wasn't like the others. I told myself that I was halfway through, I only have a 1 1/2 months to go and then I can take a break or lighten my load. And I am glad I did that. Because yesterday and today are good days. I hurt, but the fatigue is less and I don't feel like I want to die. I meet with a few of my church ladies today (they, along with my sister in law, mother, and husband are the only ones who know) I often miss our meetings and I don't commit to events because I never know what each day holds. One is an acupuncturist and I plan to see her Friday and have her stab me with needles and stuff. She also gave me some things to try, I am to make these changes one at a time and pay attention to the results.

I am not sure where I was going with all this now, sometimes my thought train derails. Or I have puzzle pieces but none of them seem to connect, so I will wrap this up quick

My symptoms are:
Severe muscle pain, I wake up stiff and can barely move.
Fatigue, I make sure I get plenty of sleep, but it feels like I've been awake for days.
My skin hurts badly when someone touches it, I cant wear many fabrics, even my hair brushing my neck hurts so I chopped it off.
Headaches/migraines.
forgetfulness(whole conversation gone, I tell my husband he's be having imaginary conversations with me)
Lack of concentration, I feel very disconnected to reality sometimes.
I will be driving somewhere and suddenly I don't know which way I'm supposed to go, or where I am, it only lasts a few seconds, but it scares me.
Mood swings, I have no control over my emotions, I flip out in a snap, and cry a lot, I hate crying
The doctor said I have 13 painful tender points, which my WHOLE darn BODY FEELS TENDER!!
And I'm sure I am forgeting stuff.

I feel like if I'm labeled with fibromyalgia it somehow diminishes what I am going through (again no offense). It's such a controversial issue and often shrugged off like it's not a big deal. What I am going through is a big deal. To me, it feels like life or death.

I can hardly take care of myself, let alone my children and they are all in school now. This was my time to seek other opportunities, be more than a stay at home mom. And now I am broken. And my dreams lie dying with my spirit. I don't even know who I am anymore. All I know is suffering. Pain and fatigue are my life.

Thank you for reading. I didn't mean to write a darn novel. I just don't know what to do and as I've been hiding away because I am prideful and embarrased to be so worthless, I don't have anyone to talk to that understands.

Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2656
   Posted 10/25/2017 3:32 PM (GMT -7)   
Hi and welcome, Samij!

Yes, if you have fibromyalgia, it can surely be a rough ride; much like a roller-coaster, at least for me.

A key thing is to pace yourself--don't overdo, but don't settle for sitting or lying down a lot, either. Movement does help. I sort of play it by ear as far as how much walking and how active I can be on any given day. Some days I can get a lot done; and sometimes even the next day is pretty pathetic!

Little goals can help. Even if you're only able to do just a little bit of a project, pat yourself on the back. If we try to see the positive things in our lives, it's not "Pollyannaish," it's just a reminder to ourselves that we do have good moments, even while dealing with other issues.

This forum has been very helpful to me, as far as how to get by having fibro. "Tons" of info in past posts, and the people here are great and supportive.

Having a strong faith helps me, personally, and it's my backbone. I also like to do hobbies as I can find time for, and go for short walks. Having a little something to look forward to helps, too, and it can be something small, such as a quick trip to a craft store, a simple picnic, mini visit to a friend, or anything.

Could your meds be making you tired? Mine do! My doctor prescribed Neurontin (gabapentin) in 100mg capsules, so it's more bearable for me. I also take Flexeril, and sometimes take only a half or quarter of a tablet, just to take the edge off.

I hope you'll be patient with yourself. It takes time to navigate fibro, for sure! Take baby steps to get to those small goals.

Could your children help with household chores? Or someone from your church, or a close relative?

I still have my dreams, and I'm trying to achieve them, inch by inch. Some days it seems frustrating, but then again tomorrow is another day! Just do a little each day towards your goals.

You're not worthless! You sound like a wonderful, concerned and caring person who is dealing with frustration. That's okay. We all need to take our steps to solve our issues and get our lives back.

Yes, fibro is a roller-coaster ride! There are definitely hills and valleys, but I've found life is still good, and while I can no longer do some of the things I used to do, I'm swapping with what I can do, and just seeing how each day goes.

Best wishes and prayers. Check out Fibro 101, the very first thread on this forum. Great info! Hope you keep posting and let us know how things are going. smile

P.S. A heating pad, using topical creams (try just a little at first), dry skin brushing, and gentle massage all help me, personally. As I said earlier, lots of ideas here--just use the search box above.
"Pray, hope, and don't worry."

St. Padre Pio

Post Edited (Luvzminis) : 10/25/2017 4:39:14 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 10/26/2017 4:46 AM (GMT -7)   
Hi, Samij226, and welcome! I'm so sorry you are suffering like this. From your list of symptoms, it sure seems to fit the diagnosis of Fibro. Fibro isn't considered a progressive illness but stress sure can make it worse and you are under a lot of stress. It's downright frightening when you have these things happen to your body! You just want it to go away and get your life back! Then add the fact that you don't want to accept the diagnosis doesn't help one iota. Most are relieved to at least have a name for what is going on in their body.

Years ago people with fibro were told it was all in their heads. We were even sent to psychiatrists! But this rarely happens anymore. Fibro is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization just to name a few. There still are some doctors out there in the Dark Ages when it comes to this illness so just make sure you don't have one of them. Ask if they treat Fibromyalgia patients. It sounds like your primary care doctor does and I'm glad they are trying to find a good rheumy to send you to. I always get board certified doctors.

But a rheumatologist will check you out and usually give you an accurate diagnosis. They will rule out other illnesses first because there is no good test for fibro. It sounds like you have had a lot of these tests already so you probably can take a copy of your tests when you do see a rheumy. Many of us have fibro and other illnesses. Some have Lyme disease, some have lupus, and we have had one member who has fibro and MS. I developed ankylosing spondylitis and sacroiliitis after I had fibro for many years. I thought the back, hip, and leg pain was caused by fibro but it wasn't! When I was put on the correct medication, I got so much better. So, if you are getting progressively worse, it's always good to be checked out again.

Many of us suffer from depression because of all that happens with us. Cymbalta is an antidepressant and it does help quite a few with fibro. Let your doctor know what your insurance provider is saying. They don't know as much as your doctor! He can fill out a form requesting that Cymbalta be covered for you and I think the insurance company needs to comply. I'm a senior and I take a muscle relaxer that has made a significant difference in my pain. But my drug supplier doesn't cover it for seniors. So my rheumy fills out the form every year and I'm covered every year for it.

I was diagnosed with fibro 30 years ago. It was called fibrositis back then. My children were quite young also. There were no health support forums out there because most didn't have a personal computer so I was on my own. I developed such anxiety and stress over this and couldn't understand what was happening. I'm one who wants to understand all things but it's not possible with this illness because the doctors don't know for sure what is causing this. But they are working hard on it and hopefully we will get some answers soon. But the stress and anxiety were practically crippling. It caused fatigue to be worse because I had more pain because of the stress and this illness was always on my mind.

One Sunday in church the minister spoke about fear. I realized that fear was causing a lot of the stress and anxiety I was having. I knew I didn't have anything to fear because fibro isn't a terminal illness. I just needed to relax and accept this illness so I could face it head on. The scripture the minister used is in my signature because it has helped me so much throughout the years.

I keep a positive attitude. I know that sounds crazy! How can I be positive when I have chronic pain? But I can. And this has helped me so much because I'm more at peace and not all stressed out over everything. I can think clearer and face whatever crops up in my life. There is a wonderful link in Fibro 101...the first thread on the forum...about how to maintain a positive attitude when you have a chronic illness. I go back to that occasionally when I need a "booster shot". 😊 Do read Fibro 101. Its chock full of information.

Since I don't suffer from depression, I didn't go the Cymbalta route. I use ibuprofen with food. Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin that has made a significant difference in my pain. There are links in Fibro 101 about magnesium malate and vitamin D3 and how they work in the body and I explain about the muscle relaxer in Mt. Lady's post about six threads down from this post. I also walk daily as a gentle form of exercise and I pace myself like Luvsmini's mentioned above. I do get a gentle massage once a month and do Trigger Point Therapy on myself when needed. All of the above has helped me live a full and enjoyable life in spite of this illness. You will find what will help you lessen your pain. It's a combination of medication, possibly supplements, gentle exercise, and a good outlook. Before long you will start leading a good life and you will be happy. It is a trial and error process because what helps one with fibro doesn't necessarily help another but you will get many suggestions on this forum and get the help you need.

I got a grip, faced fibro and tried various things to help myself. I take one day at a time and I count my many blessings. If you made two lists...one of blessings and one of problems...your blessing list would be far longer. Try it! Don't forget things like your vision, hearing, children and your supportive hubby. Just look around and you will see so many blessings in your life and that should make you smile

Smile! Yes, do that! It makes you feel better and makes everyone around you feel better. I love to smile at someone who has a grumpy face and say Hi. All of a sudden their face lights up and, 90% of the time, they smile and say Hi back to me. It makes you feel so good and it helps the other person. You forget about your pain for a little bit.

Focusing on other things and not thinking about how you are feeling really helps. The pain fades somewhat in the background.

I do not let fibro rule my life. I try to do everything but I do pace myself when doing it. I look forward to each new day with anticipation because it could be a good day. I set doable goals for each day and pat myself on the back when I can check them off my list. All of this makes you feel better and puts you in a "better place".

No one is worthless! Everyone is special and so are you! You are just going through a rough time right now but you are on your way to feeling better. Accept the diagnosis, get good medical help, do things to help yourself and your life will improve immensely.

Lastly, I did want to mention the cognitive memory problems. It's best to try to laugh them off. If you get upset. It makes it worse. The other day I was asked my phone number by an insurance company and I couldn't remember it! I started laughing and so did the other person. Then it came to me. You mentioned not remembering conversations. That is frightening and did happen to me once. My husband had died suddenly, I did get depressed for several months and, boy, was I stressed out! That combination was going on in my life when I lost memory of conversations. I'm fine now, the depression is gone and so is most stress. So don't get upset about this. It should get better as you start feeling better. I do take folic acid and that seems to help with memory too. I have a double whammy...fibro and my age! But I am doing just fine, thank you!

Also a couple of times I was out driving and temporarily forgot how to get where I was going. That's only happened a couple of times and all I had to do was relax and think. If I started stressing over it, I wouldn't have remembered a thing!

Well...talk about a novel! I've got you beat! 😂😂😂. I hope you have a much better day today. I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

dmb124
Regular Member


Date Joined Sep 2016
Total Posts : 26
   Posted 10/26/2017 8:20 AM (GMT -7)   
I'm sorry you are having such a rough time. Fibro can make life pretty miserable at times. I believe most of the people on this forum have probably been where you are at some point in their journey. It can get better. The pain, fatigue, and cognitive issues take a toll on you. I don't have problems with depression but I do have the frustration of not being able to do what I feel like I should be able to. For me, it's a matter of "everything in moderation." I can do most things that I used to do but I now have limits that I didn't have before. Those limits are hard for me to stick to. I have 2 children, 8 rescue animals, a husband, and I work full time. There are not enough hours or energy in the day to do what needs to be done but I do what I can each day. Some days, that's not much of anything but there are good days. On good days, the pain and fatigue are not gone but manageable. I have learned to appreciate the good things more than I used to. I think because of dealing with the bad so much, the good things seem that much better. On the bad days, I try to focus on some little thing my kids, husband, or pets do that makes me smile. I know sometimes the pain and fatigue are overwhelming. Be understanding with yourself. Know that you are not worthless. Even if you feel that way, I can guarantee your family doesn't see you that way. You are still someone your kids' look up to and the same person your husband still loves. Sure you are having a horrible time right now, but that doesn't change who you are inside.

Finding a good rheumatologist is key to managing this illness. Thankfully, I found a great one a few years ago. I took gabapentin, also. It seemed to help some in the beginning but over time, the benefit seemed to diminish. I then tried Cymbalta. It helped with the pain a lot. Unfortunately, I found out that I am allergic to it. The hives and itching replaced the pain. I am now taking amitriptyline. It seems to be helping the pain and a little with the fatigue. I have also tried anti-inflammatories but they didn't help much more than ibuprofen, so I went back to that. Nothing works the same for each person. Hopefully, the doctors and you will find something that works well for you.

I also use heating pads, massage, and chiropractic care to manage my symptoms. One of the best things for me is being out in the sun and doing water exercise in the pool. Unfortunately, it is now too cool to get in my pool but I'm going to check out a local therapy place that has a heated indoor pool. I have found that keeping active, even if it's only walking up and down my driveway (about 800 feet long) a few times a day, helps immensely.

I hope things get better soon!

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2069
   Posted 10/26/2017 10:06 AM (GMT -7)   
I wrote a long answer last night,

But it disappeared, hit the wrong button..

I was my worst in my 30's ..we can get some help from our drs..but we also need to learn ways to help ourselves..

Over the years i read many alternative drs and what they used for their fibro patients..

A lot of us need a sleep aid..because sleep is when your body does its repair work..

One of the best things i read froma medical newsletter was that D ribose helps your cells make energy..try to research corvalen m and fibro...

Stretching helps

Magnesium and malic acid help.

Between a good dr and self help, you can get better..i did and raised my kids, and did much better..you can too..

To me its just really important for you to know , that you can get help and feel better! We do have to pace our work out .

Lj

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 329
   Posted 10/27/2017 9:20 PM (GMT -7)   
I hate that LMJ, when you have typed out a response and then lose it!!


Hi Sammij. I don't have a great deal more to say, other than to welcome you to the group. Perhaps read what I wrote about mast cells in my reply on the "Sinus" thread. You may know all about them, having been in the Lyme trenches. Folks with Lyme do have their mast cells activate. I have seen a practitioner write that the mast cell activation is downstream from the infections, which I can agree to the logic, but once stuck in it, you don't really know for sure what is perpetuating the symptoms, unless you come upon a fix. So what about the people for whom the fix is elusive?

I have also seen a mast cell group member say that her mast cell Dr said let's ignore lyme and treat mast-cells-misbehaving. I must say, she wrote a happy post. I can't imagine that she is "all better", but progress is progress, and she was pleased.
Well, good luck with it all. It's hard, but we hang on.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2069
   Posted 10/28/2017 3:32 AM (GMT -7)   
Rock on, helath rising just had an article that for many with lyme, its never been lyme at all...


Do you read corts articles?

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 329
   Posted 10/28/2017 3:28 PM (GMT -7)   
Oh thank you LJM. I follow Cort Johnson on Facebook, but have skipped posts for a while. I have a back log of reading to do, I suppose.

Samij226
New Member


Date Joined Oct 2017
Total Posts : 3
   Posted 11/2/2017 11:04 AM (GMT -7)   
Thanks for all your responses. I had a few good days in between the bad ones. I finally got the Cymbalta, I started it yesterday and hope to see some improvement. Today I dropped one of my five classes and switch my major, and I will only do three next semester. I'm trying to look positively at my future. I got to the rheumatologist on the 9th. I am scared about it though. I am accepting that it is fibro, there is too much to support it, and to pertend otherwise is pointless. But what if this Dr disagrees, and I am left in limbo of Dx again? The acupuncture offered some muscle relief for about 2 days, in a few areas. I go again tomorrow. She recommended some vitamins. I have a list to shop for. I understand that all will not be perfect, and I just have to work on my thoughts and routines and go forward at a pace I can manage. I live covered in asper cream(I just found a nice roll on one!), heat. stretches, pills. The dark thoughts are still there, I just try to push them down. I am trying to remember, that considering my crazy life with my 4 kids, 10 animals, and husband, and school, that I am doing okay. My family loves me and I know they hate to see me hurting. It's a crazy life, but its mine, and today I feel like I'm moving forward in the right direction.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2069
   Posted 11/2/2017 7:00 PM (GMT -7)   
It is great to remind ourselves, that when we are in a flare, that tomorrow will probably be better..it can be overwhelming and we forget that it can wax and wane and we might be a lot better in a day or two..😊

Some days we need to listen to our muscles signals and back off some
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