So this is it?

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1

I hope this will all make sense cos I'm a bit foggy but I just cannot accept this! I have been suffering with pain & mobility problems in the extreme for 2 years now. I got the flu but the pain just stayed. Before this time I had a few complications that I had learned to deal with esp. as I thought it was due to my sickle cell trait. I would be sensetive to cold weather and get pains in legs & arms which I would treat with hot baths, hot water bottles etc. I would have & still have a sudden sharp shooting pain from my left foot into my leg. 20 sec sudden chest pain which I could only deal with by not moving and breathing very slowly. About 5 years ago I had these pains so hard that I ended up going to the emergency room. They suspected a stroke and did a bunch of painful test only to conclude that it wasnt. I was a IT Manager which was alot of work as I am also a Mum so my Doc always said I was stressed when I came to him with sleeping problems & eating problems. but I was always active: Gym, dancing & I used to walk lond distances frequently.

I had just moved countries with my daughter after separating from her Dad (another story), I had a good job, money, a nice apartment and was having fun & enjoying life then a shift in weather (autum)...I got the flu. I didnt thik much of it. From then on my hell started. The pain stayed..on days I was crawling through my house..I went to sooo many doctors...lost my job..lost my apartment...lost friends & relatives who thought I was lazy or just strange. They tested me for everything but found nothing. I dont even know all the meds I took ( the last one is Gabapentin - a muscle relaxer). They either concluded that the didnt know or that I was depressed! One did mention Fibro at an early stage but explained it as a condition that suddenly makes people fell pain & no one knows why and there was nothing that could be done about it. I saw it as him just trying to come up with something so I leave him alone. I stopped going to doctors cos I felt I was one step away from being labeled crazy and I could afford that as I have a daughter & I was scared of what would follow. And I am inteligent enough to know the all I was feeling and going through was very real! Today I am 33 but I feel like 83 on most days. I cant sit & cant stand for long, I cant reach & I cant bend. Stairs = hell. I have developed some kind of breating problem (coughing due to shortness of breath that subsides after a few mins). Working..NOPE! Housework is so hard...my back burns when I just stand to wash the dishes. I forget the simplest things...I know I have started talking differently and it takes alot more effort.When I do go out with friends (that have no idea I am ill cos I cant explain it and dont want to), I cant dance for long,I can nolonger wear heels; my shoulders burn so bad & my arms get heavy & my feet kill me that I can hardly walk home.Luckily I have a boyfriend who is extremely suportive but I feel like a burden to him mostly. BUT of course I DON'T LOOK SICK & have no diagnosis!

It snowed 2 days ago & I have been totaly out of action since then.My hands hurt typing this and my fingers are getting numb. I am glad I found this site cos you all are going through things exactly like I am and I dont feel alone or crazy any more but at the same time I realise that it will not get better and I find it hard to accept this! How do you live when you cant really do anything?? My life has been RUINED & I feel a failure. How do you guys cope? The pain is driving my insane,I am always tired, I cant make plans, I have lost all success & money.I wanted to have more kids... SO IS THIS IT???? What keeps you going? How do you cope? I dont care what anyone says I feel its getting worse. My daughter cant even tickle me to cheer me up like she used to & if the dog jumps on me...*@%&$§$!!

I know I should find a Doc but how do I accept it for my own sanity? When you've been through so much already in life this just feels like a totally undeserved curse.

In tears

1 Like
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Thanks for your responce Hockeymom5! It's just so much to deal with and sort out. I will try to focus on my family and I really dont want to be bitter. I guess it will take time. Thank you so much for your words

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Hello & welcome,Ammahlie. Yes,I think your first step should be finding a good doctor. I know that can be quite an exhausting challenge in itself. It took me almost 20 years to find a doctor I was happy with.

You mentioned feeling like a burden,don’t. That is the worst thing you can do to yourself. You did not fail,you are not a failure. I know how hard it is to accept what’s going on with you. I’m still struggling with that almost 20 years later but I have come a long way. Fibro & diseases like it will beat you down plenty on their own. This is not your fault & you not deserve this.

Coping: Once you have a diagnosis & you have a better understanding of what’s going on with you,ask questions,read & learn all you can from resources(books,the web & your peers).
Encourage your loved ones to learn all they can too if they haven’t taken the initiative themselves. They have to have an understanding & learn how to cope too.
No matter how many negatives,try to focus on the positives. It might help to write out a list of the positive things that make you happy.
If it is possible,do as many things you can that you enjoy as often as possible. It might hurt & tire you out but it will help you to retain a sense of who you are not who you used to be before your ailments barged in & turned your life upside down.
There are many things that can bring you down & keep you down,things that are beyond your control. Do your best to focus on the things you can control so you don’t feel overwhelmed. Sometimes you just have to throw your hands up & say I have done all I can for now.
Lastly,give yourself a pat on the back from time to time & anytime you accomplish a task or something positive ,no matter how small or insignificant it may seem.
ANYTHING you accomplish is significant.

Hugs,good luck & keep us posted :slight_smile:

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Dear Ammahlie,

I just read your profile and have to wonder if you are being treated by a Rheumatologist for your Rheumatoid Arthritis. I have Psoriatic Arthritis, both are degenerative autoimmune diseases, that can be treated with disease modifiers. Enbrel made a big difference in my life as it slows down the disease, helps pain and mobility.

I see you are in Germany, not sure about the availability of the 'biologics', but I know they are worth researching and asking a Rheumatologist about.

You are a lovely young woman, I hope that you will get some much deserved relief very soon! We also started a sub-group, Fibro and Arthritis, there is some good info there and we welcome you to join if you like, you can find it by clicking 'groups' at the top of the page, and you can click the 'discussion' page, use the search engine to get more info on just about anything.

I will talk anytime!

Wishing you well,

SK

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Oh sweetheart, thank you for sharing. I love the feelings and honestity. I got mono at age 9 and never got over it. Got mono again at 19 and spleen almost broke! Again, never got over it. Yes, been to numerous docs. They all say, "Here, take an anti-depressant for your depression. " They assume I am depressed. I used to be severely depressed but not now. Or my former doc would say, "Now don't forget we have the nice psych hospital downtown!"

A few years ago, I was in so much pain and fatigue that I used a cain. I finally realized it was all the anti depressants, etc that was making me worse! I used to live in my closet! When my kids were little and the noise was too much, I would make my bed in the closet and sleep for 15 or more hours in the dark alone.

I cope spiritually, mentally and physically. I have a relationship with Christ who knows my every pain. His word says, "I keep all your tears in a bottle." Wow our bottles are oceans! He came to earth and suffered great pain and rejection. Wth a relationship with Him , I have learned to take my pain and turn it into serving others. I pray for my sick friends. I take care of them when I can. I pray for my friends coming off meth, coke,etc. My depression is almost gone as I turn toward others.

Physically, I am very careful of diet. Wheat and MSG make me flare up big time. I also take apple cider vinegar for fatigue . I talk out any anger issues as that makes me flare as well. Talking and walking helps the mental part.

I will keep you in intensive prayer

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So sorry, Ammahlie, for your pain and suffering.

Although I was diagnosed almost 15 years ago, my symptoms began almost 25 years ago. I was able to "live with it" and get along reasonably well until about 10 years ago. Then I began a downward spiral brought on by multiple stressors. Late last year I realized that, after 15 years working for the same company, I was out of sick time and was being sick on vacation time. I had been seeing the same doctor for about 10 years/ She had been treating me with antidepressants, sleeping meds, and arthritis meds. Gradually, her solutions didn't seem to be working, and after seeing her again, I realized she didn't know what else to do with me. I started a search for a doctor who could. I'm not sure I have found one yet, but in the last 6 months I lost my job.

Disability was denied. Pain is intense and changes location. Fogginess is unbearable. Fatigue is overwhelming. Also started with weird symptoms like random vomiting and diarrhea without the other "flu-like" symptoms. Low-grade fever comes and goes. Difficulty walking - legs feel like jello - like they won't hold me up, and I weave. Can't sit upright for very long. Sometimes I can't get into the truck. Sometime it takes multiple attempts to get from a sitting position to my feet. And while I have always had migraines, they seem more intense now.

Just last week, I told my adult daughter, "I want my life back!!!" I have two granddaughters who can't understand what has happened to their Nana. Why I can't play in the yard, on the floor, or bake cookies with them. A third granddaughter is on the way. I can watch two for a couple of hours - from my chair or from the bed - but what will I do when there are 3???

Life can be so overwhelming. But finally my husband understands and knows that this is real. Up until the last few months, no-one ever knew I was sick. I didn't tell. I didn't complain. I looked and acted "normal." Now people can see it, and I don't like it!

Yesterday my husband said, "You do get up and sit in the chair during the day, don't you?" I had to confess that most days I just stay in bed. I get up an hour or so before he gets home and straighten the house, empty the dishwasher, maybe start something for dinner. But most days I do nothing. Can't read for the fog. Can't craft for the pain and lack of concentration. Can't afford to do much. Sometimes I am afraid to drive and don't have the money for gas anyway.

I recently asked the doctor (who took me off all the previous doc's meds) if I was depressed, if I needed something for it. He said, "With all you have going on, of course you are depressed! Anyone would be! You seem to be handing things right. Let's just give it a little time and see if things calm down a bit." WOW! Finally, a doc who didn't want to label me as depressed!

I agree that this life change is like going through a mourning process. I feel like I have been doing that lately. I looked online to see what the steps of mourning are, and as I modulate from one stage to another, it helps to realize or recognize that this is a step of healing in itself.

I, too, am a Christian. Although I currently battle God over why this is my lot in life, I recognize his ways are not mine. It's a good thing, because I would not be as gentle and loving as he is. Just knowing that Christ went through so much more than I have, knowing that he is here with me, gives me hope and strength even for the darkest days.

My family, those granddaughters, are what keep me going.

I know you will get through this. You need a good doc, good support, and some good rest. Rely on other people to help you get through this. Let them help! If they really care, they want to help, need to help. It's how they deal with their own desire to help you feel better.

Love as much as you can. Give when you can. Do what you can. Take care of yourself as much as you can. Dream a little dream. Live a little life. And be grateful for everything you have - large or small - that makes you feel alive.

I hope these words help you know you are not alone and that others care. Gentle hugs.

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Does the apple cider vinegar really help with fatigue? How much do you take? Most of the time I’m soooo tired!

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I really think it does! I am not napping near as much. I do hit and miss, but here is the recipe which is actually a combination of vinegar and black strap molases. This is from the Bragg Organic Apple Cider Vinegar bottle:

Take three times a day:Upon rising, mid -morning, and mid-afternoon

1 to 2 teaspoons apple cider vinegar in 8 oz pure water

1-2 teaspons of Black Strap molases or 4 drops of stevia (Never tried stevia)

Let me tell you, the molases has stopped my horrible heart palpitations! And vinegar combo has lifted fatigue and helped blood suger crashes a lot!

If you don't want the combo, try a table spoon of vinegar in water couple times a day. As I always say about remedies: If they don't help, well they don't hurt.

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Aloha & welcome to the group. How do we cope? It’s hard. Everyday is a challenge. Luckily I am retired have no children & I’m married to a wonderful guy who helps me cope. I just do what I can & figure the rest can wait. On the days that the pain is intense I just stay home & relax. Other days when I feel up to it I go out & do some chores. I have a scooter now since walking was unbearable so I can get arnd better. We’ve all tried so many things but so far nothing seems to work. I’ve tried both eastern & western treatments only to be disappointed again & again. I am now going to a chronic pain doc & even he has not been able to help me yet. We keep trying different things & I always hope whatever it is will help but so far nothing. So dear I know how hard it is to live in a life of pain. It is not really living just existing & it sucks big time!!

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Your symptoms remind me of acute porphyria. there are various types of porphyria. You can learn about it and read experiences at porphyriafoundation.com. I too avoid doctors who don’t know how to help me and am afraid they will label me as having mental issues when I know the pain is real. I started having convulsions and now have episodes of paralysis. I’ve had other symptoms that were less specific like horrendous abdominal pain, hip area pain that goes down into the legs and my arms hurt so bad and would get to where I could hardly use them. So I just sent some frozen urine to the Texas porphyria lab and did not even talk to a doctor about it. if my insurance won’t pay. its only $85 plus my overnight shipping cost. it is intermittent so it can go away and hit again weeks, months or years later. You want to get the PBG test during an acute attack. You must not ignore it if you think you might have porphyria. it does kill but not if you keep it under control by trigger avoidance, a high carb diet and treatments at the onset of a new attack.

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Do everything in moderation.

I suffered for years, before getting a correct diganoises. One Dr even told me it was in my head and I just did not want to work. It took many tries to get a Dr who understood, and many more medications to get a combination that worked enough that I was able to function for a while. My body hurts and exercising is hard. It has been raining for 3 days now, so I understand the pain you are in. Everyone here will understand your pain.

In your search for a Dr. ask beforehand when you call to make an appt. if the Dr, beleives in Fibromyalgia.

you said you used to walk long ways, try startinng to walk again but just a very short distance, Don't beat yourself up, if you had Cancer you would not beat yourself up. I also use a Tai-Chi for Seniors dvd, it is easier on our bodies. I only do the parts that I can. Some days I can do the whole thing, some days only the parts sitting down. And some days, (the last few) I don't even attempt it I am in so much pain.

May God Bless you and you will be in my prayers,

Dotty

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Ahmmalie,

Your letter brought me to tears as well. As I read it, I thought, here is a classic case of fibro. You're experiencing everything that a fibro person goes through, all of it. And it can be nasty business, as you already suspect. BUT...it's not deadly, thank God, and many of us do find some pain relief. Plus we have days where the pain is greatly reduced.

I would ask you to please try to not lump the future all into one big ball of "I can'ts." Nobody knows what the future holds. My rheumatologist feels that a significant improvement in pain relief will be found for us in about five years. While that sounds like a looooooooooooooooong time when you're in pain, it's a ray of hope. A lot of research is being done on fibro, he said. We will be the beneficiaries of it.

What's important for you is to find a doctor who can offer your some pain relief and maybe some help if you are depressed from the fibro (and who wouldn't be?) But I'm not saying that depression causes fibro, because that's malarkey. Fibro is caused by an excessive amount of pain markers that are sent through our central nervous system. It's apparently a glitch in our system, although some believe that it's a marker of something else that's going on in our systems that is showing up as fibro pain. That's certainly a possibility.

You accept it by realizing that although you cannot change it, you can do things to help reduce it. Pacing is the number one most important aspect. We fibro-ites find that we can't overdo things like we used to. No more cramming all kinds of job duties into a day, working more than 8 hours, etc. We have to cut back on things in order to make them more manageable. Instead of having pain with a full time job, many fibro people work reduced hours or part time, instead. Prioritizing what we MUST do, then tossing away the other things, helps. And what we MUST do also changes as we realize that we have to simplify our lives so we can deal with this illness.

Of course you aren't a failure, you're a person with a chronic illness that causes chronic pain. And unfortunately, it's not something visible or something that people can easily relate to. However, people who care enough will figure it out and deal with it. And as you realize that you are not alone and there ARE ways to deal with your pain and sorrow, you do learn to deal with it. You will.

So again, I will reiterate that it's extremely important for you to find a proactive doctor who believes in fibro and will help you treat it. I would definitely ask the person who answers the doctor's phones if the doctor is experienced in dealing with fibro and pain relief for it. A good rheumatologist is important too, as you need to be tested for other things that might mimic fibro.

I'm glad that you came to us because it took a TON of courage to face that nameless beast of pain and come here to find out more about it. Its name is fibro. We are here and we have it and we will help you to deal with it. Please feel free to send me a private message by friending me if you want. I'm happy to listen and offer support. I think you will find that you will feel some better and calmer just knowing what you have and that others have it too.

Gentlest of hugs to you,

Petunia

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Oh Ammahlie, your suffering in silence is something we can all relate to, as I read your post … Almost every word had me feeling like you are describing fibro to a T, oh how I can so totally understand what you are saying…
Please find a dr. That understands & treats fibro, it takes time to find what may help you, but there are things that can help
You are not a failure !! It can be hard to get away from those thoughts that say my life is ruined, and believe me everyone has said “I just want my life back” it’s hard ! And my heart goes out to you
How do we cope??? One day at a time, sometimes one moment at a time… We all have to find ways to de- stress, eat healthy, try to stay active… Sometimes that’s just getting up every 30 min to do one thing at a time, it is difficult to make any plans, but when you know there is an event you must attend, you have to plan carefully for it, knowing that resting before & after will be essential !!
Everyone has given you great feedback and I hope and pray it gives you some encouragement to know that this is not it, we continue everyday to look for better ways to manage our pain, fatigue and frustration
Before I started Savella my brain was on this crazy cycle of " why do I feel so horrible" " when is this going to end" " how can I get through tomm" the Savella helped me mentally be able to deal more constructively with this fibro
God bless you
Hugs

14

Am,

I can't be anything but sorry to hear that another person is facing this syndrome. I was a hairdresser and the owner of my own salon for over 20 years. I brought my children to work so they could nurse for the forst monts of their lives. I have been labeled lazy and malingering by my family. Not only has my body been broken but my heart as well.

What keeps me going; simple my children and the few of my friends who believe me. I have had the good grace to find a neurologist that undsratands my syndrome and took the time to expain it to my husband. Some days he remembers what the good Dr told him it is not just in my mind, and that I just can't snap out of it.. We seem to be very frustrating even to our loved ones!

The days that I can get up and walk... even for a few blocks, i am better for hours. so When I can I walk and walk. I park at the back of parking lots... every step seems to count!

This is a very frustrating syndrome, I try to ignore it the best i can. One step in front of the other.

the BIGGEST mistake I make on a daily basis is to try to make people understand what is going on with me. I find that when I just put one tiny step in front of the other i can cope a bit.

I have so much self pity some days that I can cry for hours... this feeds this illness.

I do take Meds for my digerneratave disk and fibro... Lyrica seems unpopular but with my husband saying to me take it for one more day for the first month the side effects did wear off and I am, two years later considering incresing my dose, as i have had many good months. Sleep is a big factor for me and I have tried a few benzos and halcion works best for me.

The tie to candita {yeast] seems to be another big factor, I take double doses of asodopholis a couple times a day and that helps.

best of luck

if i can leave anything with you, it is that you are probably not as crazy as you feel and the more you move and love the better of we will all be

hoping the best for you and yours

Stephanie

15

I have felt most of these things also. I have fibro but was also just diagnosed with Ehlers Danlos Syndrome. EDS is a genetic connective tissue disorder that causes the body to make bad collagen which is everywhere. A lot of people with either or both of those don't look sick. Only you know how you feel, Ammalie. Sometimes doctors who don't know what to do dismiss things they don't know about. Fibro is very real, as is EDS (some have been told they can't have it when they have genetic tests that prove it.) I have a friend in Germany with EDS. I have known Katrin for a long time but I didn't realize I could have it too, because she has Rheumatoid Arthritis and mine is Osteoarthritis. RA can be a symptom but so can OA. Don't give up. I know it doesn't seem like it but you can make it through this. There are a lot of people here who understand what you're going through. I'm getting brain foggy but I wanted to add my two cents. Please keep fighting and try to find a doctor who can help you.

big air hugs

Susan W

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Ammahlie, so sorry for all your problems hon.i suggest you keep trying for a good fibro dr and mention the diagnosis to them.

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Thanks you all so much for your words. I was unable to respond to you all because my hands wont let me but I read & cherish each word.As good as it feels to be able to post here, with us all more or less in the same boat, it upsets me even more that so many of us are suffering so much everyday, having lived totally normal lives in the past. I dont think I'll ever be a bitter person but it is just the disapointment & problems I have had since becoming ill that are breaking my heart. Bearly exsiting & far from living...it's soo hard to accept when you have a drive for life, plans, hopes & dreams. My daughter has had to suffer & sacrifice so much...it's just all not fair. Can't remember what it feels like not to feel some kind of pain or move freely. And to think that alot of you have been going through this for 5, 10 even 20 years +...you all have my respect.

Thank you for sharing and your words of advice.I hope to find a Doc soon who is at least a pain specialist & who is comitted to his role and really wants to help and listens. I may also join a local support group which may help to cope.

I have to admit, I am scared of all the pills. I have been asked to take so many different ones just to see what works but I am mostly in a more confused, drowsy and depressed state ( not to mention weight gain &hair thining) when I take them or worse I just fall asleep for hours and hours and then wake up without knowing or remembering what happend. This was really scary in the times I was living alone. I want to see if changes in my diet (the little things I can still afford to buy) make a difference.Has anyone had good experiences with diet changes?

I am encouraging everyone around me to get the best out of life and stay healthy & stop smoking etc but I only have a smal shred of positivity left for myself.Wish I could 'press pause' for just a few minutes of peace!!!!

Big gentle group hug. I hope you are all keeping well

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Oh dear Ammahlie

Don't think that you have to respond to each posting. You might be surprised at how many other members have problems with posting for very long because it hurts their fingers. Just say what is in your heart generally as a thank you for all that responded.

You spoke of your fear of falling. Do you use a cane? I have some balance issues and as I was diagnosed with osteoarthritis, I now use a cane........just as a third leg to keep me from falling. My cane has a retractable pick for icy conditions. Would that help you? Yes, I admit that you have to get used to remembering to take it with you and to use it. You also have to get used to the fact that you cannot carry so many articles from the car to the house, but I think that's better because trying to carry too many parcels can throw you off balance and you might fall just leaning over to pick up your dropped articles. I also have a shopping cart on two sturdy big plastic wheels like you see on some baby strollers. It holds a lot of things and can hold up to 66 pounds. You would be surprised at how many parcels you can put in this shopping cart. That way I can unload groceries or whatever into this shopping cart from the car to the cart so that saves you from falling and pulling too hard on your arm muscles while carrying all these things seaparately from the car to the house.

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Ammahlie,

I really believe that for me cutting out or really cutting down wheat products and sugar really helps. If I do mostly sugar free plain yogart high in protein and a lot of fresh salads, I do so much better.

Walking helps a lot too. And forgiveness is a huge help. Unforgiveness and anger make your whole body hurt worse. I've been in pain since I was 9 and I'm 46.

My prayers,

Bobbie

20

I've used a cane in the past. Better than falling and keeps you going. Some stores sell some pretty cool one.