Does this sound like Fibro?

[Holdingontohope]

Hi Everyone. I hope you all are having a tolerable day. I don't know what to do anymore. I can barely function and sometimes am bedridden from the pain. I have been suicidal from the pain. I am wondering if this sounds like Fibromyalgia. I know that I can't be diagnosed online and am going to make an appointment with a Rheumatologist asap but just want your feedback/opinions.

I am 26 years old, female. I remember in elementary school that my hips hurt. I later complained to my mom about back pain but she wrote it off as growing pains. I had stomach problems as a kid and was prescribed a daily pill for it. I have had insomnia ever since I was a kid. Four years ago, I started feeling a tingling sensation on my back and wondered if I had bedbugs or a parasite. I didn't. Then I started getting severe pain in my shoulders and lower back. During this time, I also developed cystic acne and started getting yeast infections every time I have sex (sorry if TMI).

In the quest to get diagnosed and figure out what's wrong with me, I have had 7 MRIs (2 of right shoulder, 1 of left, 2 of cervical spine, 1 of thoracic spine, 1 of lumbar spine), X-rays, blood testing for autoimmune disorders, and a nerve conduction study. All tests came back normal except for scoliosis and some disc degeneration. But each doctor said that the scoliosis/disc degeneration would not cause the type of pain I have.

Right now, I am having the worst flare-up of my life. My arms, hands, knees, entire back, hips, and ankles hurt. I am often nauseous. It seems like it is getting worse as time goes on.

Other symptoms I have are: being tired no matter how much I sleep, tons of painful muscle knots, losing a lot of hair, brittle nails, memory trouble, grinding my teeth at night, ringing ears, muscle twitching, anxiety, depression, muscle weakness, hyperreflexia, sensitivity to light and sound, and hypermobility.

I have tried countless prescription NSAIDs and muscle relaxers. Lyrica and Gabapentin aren't working. Morphine and Oxycodone helped but barely. I have stopped taking them because I didn't want to be addicted to pain pills. We just upped my dose of Cymbalta to 90mg a few days ago but I don't have high hopes that it will work. I have tried 6 physical therapists, acupuncture, muscle activation technique, occupational therapy, massage, dry needling, needling with e-stim, TENS unit, cupping, cutting out gluten, cutting out sugar; none of that helped and some just made it worse.

At my last appointment with my pain management doctor, she gave me a survey to fill out about fibromyalgia but I stopped seeing her. But in scoring my own survey, I had high enough scores to have fibromyalgia. Another doctor mentioned that it could be fibromyalgia but I ignored that...I think because I don't want it to be fibromyalgia. I don't want to deal with this for the rest of my life, but I can't ignore these symptoms anymore. Does this sound like fibromyalgia? And what do I do now if NSAIDs, muscle relaxers, Lyrica, and Gabapentin don't work? I feel like I'm running out of options and I'm terrified to live my life in that much pain.

 

[1sweed]

Hello there and welcome to the forum. Please do not even go there as far as ending your life. It is not a kind thing to do to your family. I have had relatives that lost loved ones that way and their pain and hurt and loss is never ending.

That said I hope the fact that your here and willing to talk tells me you have more courage and strength inside then you think you do. Doctor's don't always know the kindest things to say and nor can they admit they don't know. On this site most members have gone through the anger and fear your feeling right now and we too have fallen into depression and anger wondering how to cope.

I know your frustrated and depressed over all the pain your in so I will try and offer some ideas that might help you. I am sure other members will pitch in with fibro hints as well.

Watching your diet is another biggie with avoid eating lots of sugar and junk food, and processed foods. Try to eat healthy as much as you can.

Is your bed comfortable? If not either go online or to a local store and buy a 4 inch thick foam pad or a feather or fiber bed topper to put on top of your regular mattress to provide warmth and comfort. The biggest reason we hurt seems to come from lack of a good nights sleep. So keep warm and wear socks to bed and cover your lower legs & feet with a extra blanket. This helps to prevent muscle cramps when sleeping.


Try taking baths with epson salts in the warm water, it is said it helps to relax muscles and ease pain.

Try heating a comfy blanket in the dryer and wrapping your self up in it, as the warmth will help your muscles when sitting at home.

Stress can make pain worse, so try to relax by watching funny movies with friends or family.

Start a new hobby that can take your mind of your pain for a little while or take short walks and watch nature it can be relaxing. Read a good book. Find a local indoor pool and see if they give easy exercise programs. It is said that pool water can help as the water makes it easier to move and stretch.

Watch the video's in the hope and inspiration section something might help you.

Consider seeing a counselor who might help you with your depression and anger. I have gone many times when I was so over whelmed with sadness and did not know what to do. It is better to see someone in that field who can listen without making you feel worse inside, like a pastor at a church or local mental health office.

Why did you give up on your pain management doctor? It sounds like she was trying to pinpoint your symptoms and possibly help get your diagnosis??
I know how hard it is to go day after day in severe pain and yet all tests come back normal. But it is self defeating to not follow through when others are making an effort to help you and at the very least give you sound medical advice.

I waited over 8 years to get my diagnosis but I never gave up all hope that someday I would improve and it has to a point. Your a bit luckier than me because I am allergic to all the pain medications that my doctors have given me so must use over the counter stuff.

What is best at this point is to try and manage each symptom you have and keep track of any changes to your condition. Fibro often rears it's ugly head in many areas of your body and so each place you hurt or notice things are not right is something new to get semi under control. Let us help you get started with that, as well as, offer friendship and support, knowing we do understand and we are here to help each other the best ways we can.

I hope you will keep coming back and posting. I look forward to reading your posts and offering whatever advice you might need to stay afloat.

 

[diamond]

HI holdingontohope....welcome.

I can so identify with your suffering and you are so very young to be dealing with this.

I think 1 sweed has covered many good tips...the fear especially is awful when you feel you are running out of coping strategies and the pain is so high.

i think you do need to explore pain management...we all hate taking drugs and dont want to be addicted or have to deal with side affects but a good pain management doctor should be able to work with you to find a combination that reduces the pain.

I can feel your desperation bouncing off the page and at this point please do pursue more help as soon as possible.

Let us help you with each step if you are overwhelmed.

You could start by checking in with us everyday so you feel you have someone to vent to...then tell us if you have managed to make an appointment with either the pain management doctor or a rheumy or a mental health worker or got a close friend to support you and help guide you.

Please reach out for help as im sure you are dearly loved ..but at the same time i am not invalidating your feelings of despair because i have felt them.

Stress is the biggest trigger for pain to go crazy with fibro as far as my own personal experience and its a tough one because the pain and changes to our lives is so stressful.

So you need to take as much care of yourself as you can...wrap up with heating pads or hot water bottles...use ice if that helps ...and rest when the pain is so severe.

I know being diagnosed is daunting but at least you will know and start on the journey of acceptance plus there are other illnesses with similar symptoms ....have these all been ruled out?

Sending you a warm hug from the UK.

 

[isitme]

From what I've read and seen over the last year or so since I was diagnosed FM sufferers can experience almost anything. There are of course symptoms which are more prevalent.
Interesting that you mention pain in childhood because when I look back I remember "signs" of fibromyalgia way before the pain started and it got very bad. Like being maybe 13 and getting random burning sensations on different parts of my body with no external cause. Brain fog at a young age, etc.
I went through the MRI thing as well. Nothing wrong.
I am only 27 myself so I feel your pain. Very sorry this is happening to you.

''Other symptoms I have are: being tired no matter how much I sleep, tons of painful muscle knots, losing a lot of hair, brittle nails, memory trouble, grinding my teeth at night, ringing ears, muscle twitching, anxiety, depression, muscle weakness, hyperreflexia, sensitivity to light and sound, and hypermobility.''

I deal with a lot of those myself. Some of the worst for me are the feelings of dread from not knowing what will happen next, feeling like i'll lose my mind, but the absolute worst is this very unique feeling in my arms which is something like a combination of muscle shaking/tremors (but they appear normal), itching, and restlessness. Literally almost unbearable. I was in a terrible state of panic at the ER the other day because of these symptoms and I remember thinking if I had access to a gun I would have killed myself. Our bodies are capable of putting us through so much hell. It's so scary.

I do notice periods where my symptoms are absolutely horrendous and periods where I can go a week or two, maybe 3 with "only" spinal/joint/neck/back pain, which is some relief considering the other symptoms will dissipate.


But I know how terrible it can be when you've been on the meds and you've tried to remove stress and tried to get good sleep and used nsaids, and done the warm baths and used the ice packs and had the mris, done the test, and the doctors are saying nothing is wrong, and your body and mind are unrelenting with extremely unpleasant physical and emotional symptoms. It is a desperate situation and literally a fight to survive. It really is a terrible tribulation. Almost cried writing this. I'm very sorry for your pain

NEVER EVER ENCOURAGE ANY MEMBER TO HARM THEMSELVES, this post has been edited.

 

[medicmurphy]

Let’s not encourage ANYONE to take their life. Yes, fighting a painful condition can feel hopeless and breed depression which in turn causes “ faulty” thinking. This is exacerbated by Fibro fog leading to the inability to think clearly and concisely. This is where unwise and not well thought out decisions can turn into action. Instead we all should direct vulnerable members to seek out professional help. We must be responsible in this direction as we are the ones who are thinking clearly, able to assist. I’m shocked to read that a member would in ANY way support or encourage such a step. Please do not be complicit in such an undertaking. I hope a moderator sees this post!!

 

[isitme]

Let’s not encourage ANYONE to take their life. Yes, fighting a painful condition can feel hopeless and breed depression which in turn causes “ faulty” thinking. This is exacerbated by Fibro fog leading to the inability to think clearly and concisely. This is where unwise and not well thought out decisions can turn into action. Instead we all should direct vulnerable members to seek out professional help. We must be responsible in this direction as we are the ones who are thinking clearly, able to assist. I’m shocked to read that a member would in ANY way support or encourage such a step. Please do not be complicit in such an undertaking. I hope a moderator sees this post!!

looks like what i said went completely over your head. it's like an alcoholic who agrees to allow himself a drink tomorrow provided he gets through today sober. and the same arrangement tomorrow. i'm not telling anyone to kill themselves. the theory is you never get to that step because it is a crutch helping you through the day. a relief on the horizon. and you keep doing it every day. i'm actually shocked you took from my post that i was encouraging or supporting suicide. read carefully. the internet is literally filled with anecdotes of smokers, drug users, and alcoholics who got through the day solely with the idea that "tomorrow" they would have a drink, or a smoke, or whatever. it doesn't mean they actually did. it's a psychological tool to help someone who is completely desperate cope with their situation. eventually they get to a day where they don't have to make the agreement. then a week goes by. then years. but i suppose you'd rather tell the hopeless individual THAT THEY'RE STUCK HERE!! NO ESCAPE!! DEAL WITH IT!!! i am not nor have i ever advocated suicide. that is disgusting that you are claiming i did. suicide is never the answer

moderator just delete the post please since it was misconstrued and i cannot edit it

 

[Dooi]

I am the moderator and do believe your original post can easily be misconstrued given the wording. But I also understand your point of view and am an advocate for free speech all the same.

I don't think you should take your life, but you also shouldn't remove that possibility.

Your words say not to rule out the possibility of suicide - this does tend to lend itself to the suggestion of suicide being an appropriate action.

Note, I'm not saying you advocated suicide but choose to write the following just in case others wander across this thread and read through to here.

I don't believe suicide is ever an appropriate choice except under the most rare situations were family and friends have made a joint decision due to terminal illness. Perhaps I'm small minded, but suicide is very detrimental to everyone; neighbours, friends, family and loved ones. It's also, for those that have survived attempts and reflected back upon the action from a happier place, been realized to be the wrong action to take.

I forget where I read it, but there was a bridge in North America that was responsible for many successful suicide attempts. Fortunately, a handful of people did survive. For those that survived, each of them said that the second their feet left the bridge they instantly regretted what they had done but it was too late to turn back. Based on this one could assume that all those that jumped had the same regret.

If you feel suicidal call a friend or family member. Too embarrassed or think nobody cares? You're wrong, even if you think you're right. This is the saddest part of depression - one can no longer trust one's own thoughts. Call a suicide prevention hotline even if it's just for a second thought on that matter. You're stronger than you think and you can overcome anything.

Fibromyalgia is terribly draining and painful. There's no doubt about that. But I think we should always try to encourage both for ourselves and others, more positive solutions so that each of us can find ourselves moving towards a better place. I think suicide and self destructive behavior is often the result of being terribly frustrated and at the height of pain, or the climax of problems if you will. But there is help and alternatives for each of us that will make life worth living and beyond that, even enjoyable. We must continue to search for those solutions and try, through despair if we have to, to find the help that works for each of us.

I truly believe that one day in the future depression will be viewed just as all other illnesses; treatable and of no fault of the patient. I also think one day people will look back at how those with depression were persecuted and the thoughts won't be too far different than how we view other groups of people that have been persecuted based on religion, race, etc.

Depression can be as painful as Fibromyalgia, and I suspect, the two often go hand in hand. What a terrible recipe each of us has been served if so; but you're so strong and you can overcome both. The universe has given you a challenge you don't deserve, but choose to fight back regardless.

Give yourself that opportunity, to fight, and you might be surprised what can come of it; what you may learn or the people you may end up being able to help in the future.

Just my two cents.

If you're reading this and feeling really unhappy and destructive; check out one of these websites and give them a call:

https://suicidepreventionlifeline.org/

https://suicideprevention.ca/need

 

[medicmurphy]

You’re post did not come across as an anecdote. If that was your original intent and it did not work out, please do not get angry at me. As David the moderator pointed out, some of your wording definitely led the reader to conclude that suicide is an option.

No, I would not tell a person who is suffering greatly to suck it up, deal with it! I too live with Fm and CF. I know full well what daily pain feels like. Not to mention the myriad of other symptoms. Instead, I endeavour to encourage fellow sufferers to keep fighting, seek out the best they can to find solutions, try and find positives albeit sometimes the positives are small. Yes, life can seem huge and overwhelming thus, how much more so the need to show empathy, sympathy, compassion and hugs. On this forum....virtual hugs. Never would I wish to devalue the precious persons life by suggesting in any way they should end their life because at the moment they are broken. Their life is valuable.

You sound very angry. As you said, the post was misconstrued. Not because I jumped on something and accused you out of the blue of suggesting a tragic course of action. Unfortunately it is because of what you posted. It’s not just one sentence but a whole paragraph. I guess this is an excellent example of the importance of proof reading. Not just for you but for all of us on this forum. We have some very sick members with tired and fragile emotional states that require our sensitivity.

Yes, freedom of speech is important, but if that speech tears someone down or damages another, especially on a health forum, then I do not support it. In this case, suicide was mentioned in a way that could of contributed to a tragedy. In all respect, don’t lash out at me but except responsibility for “how” you worded your post. Now please, let’s move forward.

Sincerely,
Debra