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Newly Diagnosed with Fibro, 18 year vet of pain

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Posted 10/3/2016 5:27 PM (GMT 0)
Hello all,

I am not sure what has led me to this forum, I have been doing as much research as possible since being diagnosed and I feel so overwhelmed, alone, and scared. I am 28 years old, I have a 5 year old daughter, a loving husband, and a large family who are all as supportive as they can be. I have struggled with severe pain since I was 10 years old. No one ever considered that I could have FMS, every doctor I have ever gone to until recently has always seen a 28 year old complaining of severe pain and immediately labeled me as a drug seeker and never did anything to help. If they did help it was only by throwing a band aid of pain meds on the problem, they never listened, never cared, and were quick to drop me as a patient. It wasn't until I did research on my own for weak and painful joints that I discovered I had fibromyalgia, and during my first appointment with a new primary was diagnosed and referred to a rheumatologist and pain specialist. I haven't been in to see the Rheumatologist or pain doctor yet, my PCP prescribed Methocarbamol 500mg 3x daily, along with my gabapentin 900mg 3x daily, I was already on for the nerve damage in my ankle following two surgeries. She is concerned with my depression and anxiety more than she is about the severe pain I live in daily. I understand that she is like every doctor and covering her own so she is hesitant to write a script for pain medication, but at this point I am losing my mind. Nothing is working to ease the pain, not even smoking marijuana, which she offered to get me a medical license for. Of all the symptoms I suffer from the pain is the worst, followed closely by the memory loss, concentration issues and the insomnia. I am begging all of you for help, suggestions, tips, anything that will help give me some form of relief before I really do lose my mind. I appreciate all of you taking the time to read this and respond with your suggestions. I hope to get to know each of you and learn from you. My name is Amber by the way.

Post Edited By Moderator (Sherrine) : 10/3/2016 12:35:50 PM (GMT-6)

Posted 10/3/2016 7:05 PM (GMT 0)
Hi, Amber, and welcome! Please try to relax. The stress you are under can cause more pain with fibromyalgia! This is only maki g things worse for you. You will start to get answers once the rheumatologist sees you. I hope they are board certified and also believe in fibromyalgia. There are still some doctors out there in the Dark Ages when it comes to this illness.

The first thing that needs to be done is have blood work to rule out other illnesses that have many of the same symptoms as fibro. It sounds like you have diagnosed yourself and that's not a very good idea. There are illnesses such as lupus or Lyme disease that need to be ruled out first before a diagnoses of fibro is given. There aren't good tests for fibro so it is a process of elimination. Because of the age of onset of pain for you, I would make sure that Lyme disease is ruled out. You develop that from a tick bite. If you played near or in wooded areas, tall grass, etc., this could be a definite possibility. I'm not a doctor. I'm just guessing. But that was the first thing that popped in my mind.

I have had fibro for 29 years and have had a full and enjoyable life in spite of this illness. I'm a positive thinker and I know that has helped me a lot too. I know you will get answers pretty soon and hopefully you will be well on your way to getting control over your illness. That's important. Right now you feel your illness has control over you!

I use ibuprofen with food, Tylenol, magnesium maleate, vitamin D3, and methocarbomol (Robaxin) to help keep the pain under control. I also walk daily as a gentle form of exercise. You need to keep moving with fibro or you will be stiff as a board and have more pain.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. There are links to info about vitamin D3 and magnesium maleate andnhow these work I. The body. All of Fibro 101 is good so do read it.

Here is another good link all about fibro.

umm.edu/health/medical/reports/articles/fibromyalgia

You should start keep a journal on how you feel and your pain levels when doing things. In Fibro 101 there is a link with pain charts in it. Pick your favorite chart, print it out, and use it to describe you pain in the journal. Then take the journal and the pain chart with you when you see the rheumatologist or any doctor helping you. This really should help them understand what you are feeling and could help with diagnosis too.

Do let us know what you find out because we do care about you. 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
Posted 10/4/2016 1:46 AM (GMT 0)
Hello!

Your mentioning of weak and painful joints made me think of Ehlers-Danlos Syndrome with Hypermobility. Have you discussed this with your doctors at all? From what I hear it is often missed, and had a lot of symptoms in common with Fibromyalga. I wish you the best!

http://www.ehlersdanlosnetwork.org/hypermobility.html
Posted 10/4/2016 2:00 AM (GMT 0)
Hi welcome,

Definitely hear you 😊

Mine also began very young..but maybe not as bad..i have a genetic form of fibro.

My mom of course had no idea, but she would say, its growing pains...

I was at my worst about 30..but i was a young mom and did not take enough time for myself.

Gradually over time, my dr helped me more, but just as important i kept up with research and read alternative docs newsletters..so eventually i learned to self help.

I usually say..my drs help me with about 50 per cent, and self help helps 50 per cent...

I take some meds, use topical pain relievers, acupressure, sometimes acupuncture , at times i get some physical therapy

Stretching exercises are a must for me.

I did ok managing until my vit d levels dropped too low and then it seemed like i was having to almost start over..so i always ask if people had a test for low vit d levels.

Sounds like you are on a good track with your referrals..it a great forum

Lj
Posted 10/4/2016 5:42 AM (GMT 0)
I have a whole truckload of problems and these ladies here have helped me with some wonderful tips on easing the pains I have.

I take gabapentin 600mg at night and 100 mg as needed on top of that. I use heating pads, ice packs, hot showers, hot Epsom salt tub soaks, I take 5000iu vitamin D and B12, and I use Salonpas gel.

I'm just getting over an arthritis flare which has my fibromyalgia grumbling too. Fun, fun, fun (not).

Ask away here, there's a wealth of information and ideas to try. Just remember everyone is different and what may work for one may not work for everyone.
Posted 10/4/2016 2:26 PM (GMT 0)
Thank you all for your caring responses. It means a lot that you have all taken the time to reply. I have had blood work done to rule out Thyroid, Lupus, and Lyme Disease, and I have had multiple images taken in Xray, MRI and CAT Scans. My doctor diagnosed me with Fibro after I brought it to her attention. Because I have taken the passive approach in the past and trusted doctors to do their jobs, I chose to be proactive when it comes to my health, and not rely on my doctors to catch something. Again this is only after I have had to go to numerous doctors and never had one actually listen, or rather I get told they only have time to hear about one problem, so they wouldn't listen about anything else. Hopefully this doesn't come off as rude, just wanted to fill in a couple things.

I read that stress doesn't help anything, but its hard to relax and not stress about all of it. I try to decompress, and let go as much as possible, but I am just so miserable that its hard to. In the past I have let positive thinking build my hopes up only to have them knocked down, so I have tried to think more realistically when it comes to my health, that way if its the worst I am half prepared for it, and if its good then its better then I expected.

I read Fibro 101 before I ever posted so I had more information and what to expect. I read everything I can about how to help manage the symptoms, the do's and don'ts for fms. I have also started the pain journal as many have recommended this way when I see my doctor we have a guide as to what helps and what makes it worse.

I appreciate all of your advice and again look forward to getting to know more about you.
Posted 10/4/2016 2:42 PM (GMT 0)
Thanks for filling I. The spaces! We can only go by what you write. Do keep moving though and do stretching exercises. They do help.

Two weeks ago I had a terrible fall and ended up slamming my back, hips and head on a tile floor. I felt all of my vertebrae crunch. I have osteoporosis, too and was a little nervous to even move in case I broke something. Of course the muscles started screaming at me and I really could barely move. But I started doing the stretching exercises and in fifteen minutes I was able to get in a sitting position. My back was still spamming and it took another fifteen minutes to be able to get off the floor.

Once I sat down on the sofa, I continued to stretch and within another half an hour all the muscles stoped spamming and I wasn't having much pain at all. This would not have happened without doing stretching exercises! So give that a try.

Sherrine
Posted 10/4/2016 4:28 PM (GMT 0)
Hello Amber & welcome to Healing Well. You have a lot of experienced members here that can give you tons of information & support about Fibro. I read a lot here at Healing Well & do not normally post in this forum. I cannot give you any info about Fibro, however, management of chronic pain I know very well.

As far as the PCP rxing pain medication it is very rare these days for one to write a script for pain meds even short term. Treatment of chronic pain has changed a lot in the past 4 years. The DEA, CDC & NIH has rules & guidelines that all drs are now following. These changes were brought about because they think drs has been over prescribing narcotics far too long. Granted the pill mills & unscrupulous drs needed to be done away with. However, with these new guidelines legitimate drs are in fear of losing their license to practice. There is a prescription monitoring program in place now & the higher ups know what the drs, rx's, how much & how often & who to. Its a very controlled & restrictive environment. Many long term chronic pain patients are paying the price for all of these changes.

Try not to take it personal that your PCP is not offering pain medication. By all means keep your appt with the PM dr. He/she too has been affected by these changes but if the dr feels pain medication may help you this will be the dr to treat it.

Take care.
Posted 10/6/2016 2:13 PM (GMT 0)
I refuse to give up because they aren't doing anything about the pain, I've lived inside this world of pain for so long what difference does another day make. They want an MRI of my neck/shoulders to see what is causing all the pain, and I received an email from my doctors office about medication, and I nicely let them know that I am not requesting pain medication, that I am asking her advice on the trigger point injections that I read have helped, and also asked about chiropractors, massage and physical therapy. It aggravates me to no end that doctors are the biggest pill pushers there are out there, and yet they try and treat me like a drug abuser. I try to stay nice about it, and jump through their hoops they want me to jump through, but I can't even get them to look at other not medication solutions. It is so maddening.

What have all of you tried that helps reduce the pain and the stress?
Posted 10/17/2016 1:18 AM (GMT 0)
Get a IgeneX WB for Lyme disease, Mycoplasma, Babesia. The etiology of Fibro is largely pathogenic based.
Posted 10/17/2016 1:21 AM (GMT 0)
If you take an immunesuppressant drug and your condition worsens, the likelihood of these symptoms being of a pathogen is high. Just rule out infections before being diagnosed with Fibro, it's just a made up word for something that they have not found the causative agent, yet.
Posted 10/17/2016 11:49 AM (GMT 0)
Birthdaysuit, your statement that fibro is a made up name for our symptoms is not only wrong but also very hurtful to those of us suffering from this illness. Fibromyalgia 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.

This is from the National Institutes of Health.

www.niams.nih.gov/health_info/fibromyalgia/

Here is another wonderful link describing this illness.

umm.edu/health/medical/reports/articles/fibromyalgia

I hope you read these, digest these, and realize just how ignorant your statement is. Please stay in the Lyme forum. Comments like these will not be tolerated in the fibro forum. Thanks.

Sherrine
Posted 10/17/2016 4:56 PM (GMT 0)

Sherrine said...
Birthdaysuit, your statement that fibro is a made up name for our symptoms is not only wrong but also very hurtful to those of us suffering from this illness. Fibromyalgia 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.

This is from the National Institutes of Health.

www.niams.nih.gov/health_info/fibromyalgia/

Here is another wonderful link describing this illness.

umm.edu/health/medical/reports/articles/fibromyalgia

I hope you read these, digest these, and realize just how ignorant your statement is. Please stay in the Lyme forum. Comments like these will not be tolerated in the fibro forum. Thanks.

Sherrine

I do not deny the suffering people experience with Fibromyalgia; I happen to be diagnosed with it, CFS also; censoring my comment is not only wrong but will hide the fact that many people suffering from Fibro have an underlying illness. And if you read my statement I mentioned that Fibromyalgia has no known causative agent. It's an autoimmunity, and most autoimmune problems are in fact due to an underlying causative agent. Just because a medical organization recognizes it's existence, does not make this statement anything less than true.

"The cause is unknown. Physical injuries, emotional trauma, or viral infections may trigger the disorder, but no one trigger has been proven to cause primary fibromyalgia."

It's a buzz word to mask the underlying etiology of your and my symptoms. It's like a medical pyramid scheme where they diagnose you with the broad fibromyalgia condition that bunches together various symptoms with no known cause. Fibromyalgia is not hereditary, either and in studies people who suffer from Fibro have a b-cell mutation from various pathogens like mycoplasma. This in turn leads to what most doctor believe causes Fibro; an off kilter of the HPA axis. So, an overworked immune system due to pathogen load is one cause. You and I, most likely have elevated IL-1, IL-6, IL-10 and TNF-alpha levels and when it comes to this 'off kilter' of the HPA axis an 'immune response' can not be modulated. So, a causative agent, which would be the stressor activates the HPA axis, such as an immune response. The case studies I have read of others who also suffer from Fibro can have both immunosuppression and hyperactivation of the immune response. The reason both people experience symptoms from these responses, is because immunosuppression leads to a greater heavy metal and pathogen load, where as hyper-activation leads to greater inflammation and in many cases the immune system is unable to fight off the pathogens so we develop chronic pain and illness with increased inflammation that is prolonged by immue response due to the stressor.

So, I believe chronic pain is caused by a decrease in biological pathway functioning and this decrease is directly affected by pathogens; stress and trauma can be the trigger, which is common in Fibro. Each pathogen affects the body in its own way and the cumulative effect of all our pathogens causes our sequelae. One could argue our genetics play a role but the pathogens directly affect our genes though epigenetic shifts. On could argue nutritional deficiency plays a role but pathogens directly cause nutritional deficiency. One could argue environmental factors play a role but if no pathogens were present, our immune response would be able to handle an increased environmental toxic load. Pathogens are the cause of our troubles and every single person has them, it's just a matter of immunity.

I hope you find the cause of your symptoms. God bless.

Post Edited (birthdaysuit) : 10/17/2016 11:28:32 AM (GMT-6)

Posted 10/17/2016 5:02 PM (GMT 0)
I'm not trying to be mean either, I'm trying to help you find the cause; I did and many of my friends have. Have you run diagnostic tests for Mycoplasma, Borrelia, Bartonella, Babesia, etc. One can have these infections and remain asymptomatic, stress and trauma can bring them out and an autoimmunity can later develop.

Fibromyalgia has a cause and many doctors do not want to admit this. Again, I'm not denying your suffering, I have Fibro too but I was hurt to realize that doctors were prolonging an illness that can be healed or at the least kept under control.

Post Edited (birthdaysuit) : 10/17/2016 11:12:20 AM (GMT-6)

Posted 10/17/2016 5:45 PM (GMT 0)
I really appreciate all the advice everyone is giving, it has led me to learn so much more about this condition. I have found an incredible Rheumatologist, who is like an answer to years of prayers. Her mother also had Fibro and knowing that I have a little girl to raise as well she is working with me to give me a life back. She started me on Venlafaxine 75 mg, we are working on getting physical therapy, as well as setting up a time with a therapist/support group, and we have ran all the blood work. Her only concern was that my creatine came back pretty high, and that the blood work shows an inflammation in my body. But together I honestly feel like I am finally on the right path to having a life again. But the blood work ruled out deficencies and as for now shows no RA.

Birthdaysuit I completely understand what you were trying to get across, that Fibro for doctors is a name that will cover all of or most of ones symptoms, and that its hard to get them to find an underlying cause of the Fibro. I will definetly go read about the EDS, because I never played sports, I could be walking and my ankles would role, I have also noticed that most of my pain comes from a combination of various joints.

My MRI came back and shows pretty advanced degenerative disks, along with shrinking of the cushion between vertebrae, narrowing of the passages for the spinal cord along with other issues. Pretty well that at 28 I have the back of a 60+ year old. I again am so grateful to everyone for their suggestions, and encouragement, I can't express my sincere gratitude for helping me through this time in my life.
Posted 10/17/2016 7:16 PM (GMT 0)

miserablemommy said...
I really appreciate all the advice everyone is giving, it has led me to learn so much more about this condition. I have found an incredible Rheumatologist, who is like an answer to years of prayers. Her mother also had Fibro and knowing that I have a little girl to raise as well she is working with me to give me a life back. She started me on Venlafaxine 75 mg, we are working on getting physical therapy, as well as setting up a time with a therapist/support group, and we have ran all the blood work. Her only concern was that my creatine came back pretty high, and that the blood work shows an inflammation in my body. But together I honestly feel like I am finally on the right path to having a life again. But the blood work ruled out deficencies and as for now shows no RA.

Birthdaysuit I completely understand what you were trying to get across, that Fibro for doctors is a name that will cover all of or most of ones symptoms, and that its hard to get them to find an underlying cause of the Fibro. I will definetly go read about the EDS, because I never played sports, I could be walking and my ankles would role, I have also noticed that most of my pain comes from a combination of various joints.

My MRI came back and shows pretty advanced degenerative disks, along with shrinking of the cushion between vertebrae, narrowing of the passages for the spinal cord along with other issues. Pretty well that at 28 I have the back of a 60+ year old. I again am so grateful to everyone for their suggestions, and encouragement, I can't express my sincere gratitude for helping me through this time in my life.

Definitely ask for your results. Get to know and understand the tests your doctor gives you. Has he checked your Erythrocyte Sedimentation Rate? Do you have arthritic symptoms, any joint, muscle, bone pain? And yes, this is exactly what a lot of doctors seem not to understand. They throw out all other possibilities and diagnose you with Fibromyalgia. They never find the causative agent and instead try to treat the symptoms. This can be counterproductive.

It's like scleroderma a rheumatic diseases of which 'cause' is supposedly unknown. I have this but my doctor knew that diagnosing me with this wouldn't do anything but create more problems. We already found the cause of my symptoms so treat the root of the cause. It's like being diagnosed with ADHD when you have Lyme disease or some other pathogen. Lyme causes ADHD and various neurological disorders, treating 'only' the ADHD would be highly counterproductive. IT'S VITAL to rule out all infectious agents and Pathogen w/ sensitive, accurate diagnostics and a clinical diagnosis. I had the terrible occurrence of visiting a rheumatologist who in no less than three minutes diagnosed me with Chronic Fatigue Syndrome and tried to prescribe steroids. If I accepted I would of been in deeper trouble as steroids suppress the immune system and my infection would of spread. The guy was a tool.

Not all rheumatologists are like this, many are far from it. Just ask questions, don't believe everything your doctor says.
Posted 10/17/2016 9:32 PM (GMT 0)
Thank you for explaining your post better. We have had many people with Lyme disease come to the forum basically saying fibro is a garbage can diagnosis and that's what I thought you were saying. We also have Lyme people come here and tell us we don't have fibro but instead we have Lyme disease. That doesn't go over well either. But I'm sorry I reacted so quickly. I'm glad you are trying to help.

Right now they believe fibro is a neurological problem and our bodies interpret pain much greater than the average person.

By the way, at last look, fibromyalgia is not considered an autoimmune illness.

Sherrine
Posted 10/18/2016 12:47 AM (GMT 0)

Sherrine said...
Thank you for explaining your post better. We have had many people with Lyme disease come to the forum basically saying fibro is a garbage can diagnosis and that's what I thought you were saying. We also have Lyme people come here and tell us we don't have fibro but instead we have Lyme disease. That doesn't go over well either. But I'm sorry I reacted so quickly. I'm glad you are trying to help.

Right now they believe fibro is a neurological problem and our bodies interpret pain much greater than the average person.

By the way, at last look, fibromyalgia is not considered an autoimmune illness.

Sherrine

Yeah, sorry I came in a little hot headed but I hope you better understood what I was trying to explain. And I had first hand experience with doctors trying to cover-up the fact that I had something causing the illness of which they were trying to treat the symptoms for, this whas out of sheer ignorance, incompetence or something else. You can't treat a patient if you heal them or at least put the illness in remission. Not saying it's a large scale medical conspiracy but there are 'some' doctors who collude with diagnostic companies, drug companies, etc.

Experience differs and I have had the unfortunate event of introducing most of these rheumatologists to B. Burgdorferi, Mycoplasma, and Babesiosis infection. They denied and denied, finally my persistence won them over and I tested positive for all three. They prolonged three infections that would of been easier to treat had they listened to the patient.

And I stand by my word that Fibro is a label which encompasses many different illnesses; that isn't to say people aren't suffering, rather they are suffering even more so with stealth illnesses, viruses of which diagnostics can not test for. Many Fibromyalgia patients, have Lyme and do not know it, many have Babesia and do not know it. These infections cause Fibromyalgia. Many people have autoimmune disease and are again, diagnosed with Fibromyalgia. There's more to this than just, I have Fibromyalgia.

Like I said in my previous comment, almost all infections off kilter the HPA axis this can have a tremendous neurological impact, which off sets the fight or flight response. Lyme infection can cause severely sensitive skin as well as the classic Fibro symptoms, allodynia and Peripheral neuropathy. Babesia can make you hear things miles away; that's an exaggeration but it can make your brain hypersensitive to sounds, light and pain. Thousands of bacterial and viral infections cause the broad symptoms of Fibro.

I believe you and I do not interpret pain greater than the average person, we are dealing with pain greater than the average person, which means we are troopers. God bless, hope you get better!

Post Edited (birthdaysuit) : 10/17/2016 6:59:28 PM (GMT-6)

Posted 10/19/2016 9:42 PM (GMT 0)
Even those of us with these diseases have trouble explaining them, think how hard it is for drs.. Who have not experienced it..

Sounds like your new dr. Will be a great help to you, esp since they have a family member with the disease..

Please share your experiences..

Lj
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