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Just diagnosed, and I have physically demanding job/career
5 Replies
thotchkiss - February 23

I have just been diagnosed with FM and have been doing as much research as I can... which has me absolutey terrified! I am a horse trainer and that is my life. Everything I have read basically has said I will never be able to do my job or even ride again. I've been working with FM pain for 4 months now and it is only getting worse. Of course, now diagnosed I was hoping that I would be able to resume an almost normal life and continue progressing up in my career. Does anyone have any advice or information for me?

Thank you.


January - February 23

Hi thotchkiss, and welcome. I don't know what you've been reading, but please don't allow yourself to be so disheartened!!! Please! Every single one of us is different. Right now, just accept you have a problem and resolve to do what you can to take care of yourself, learn all you can and try to get better.

You mention you have pain, but that can be due to many things. Is it musculoskeletal? Or nerve pain? Or does your skin hurt all over? Do you also have extreme fatigue? Do you sleep well? Have anxiety? Have GI issues? Are you prone to overwork, are you a perfectionist? I think it's best to break things down into individual symptoms and see what you can do to address each symptom.

Some people cannot work again and go downhill, but lots of us find ways to manage our symptoms, and even cure some of them. (I did.) Your attitude, and your willingness to take control and do your own research will benefit you the most. Doctors are too busy to deal with each individual case, and fibromyalgia is a very "individual" thing. YOU do the work, and take your information in to a doctor who will work with you to find the best solutions to your problems. If your doctor won't work WITH you and listen to you, find another who will. Lots of us work, and a little of the right medication can help you keep going - but you will have to learn to pace yourself and not over-do it. The best approach to take is to get a notebook and track your symptoms. See if you can find out what causes you to feel worse, or better. Fibromyalgia may be caused by any number of things, so getting a really good diagnostic workup is key. You may have to fight hard for this.

These are a few of the things I would check out. Some things here are considered "rare" diseases, which aren't so rare - but doctors don't know about them, and almost never check you for them:

Food allergies. One example: Gluten sensitivity/celiac disease. For some of us, going strictly gluten-free helps control pain. You might have GI issues, but many celiac patients do NOT. Doctors think this is a rare GI disease. Wrong. A large group of celiac patients suffer from chronic pain or lifelong depression. A change of diet will cure this! If you have celiac disease, you are unable to absorb nutrients properly, so you may need to take supplements. There are many that help with fibro.

Infections. Recent (or past) viral infections? Was that "flu" really Epstein Barr? Cytomegalovirus? (Can be treated with antiviral meds.) Bacterial infections caused by ticks or insect bites? (There are at least 30 bacterial infections you can get from one tick bite, and this may be true of other insects too.) Untreated Lyme Disease that has become chronic? VERY hard to diagnose. Chronic Lyme looks a lot like fibro. For a great symptom list (and more information), google the book by Dr. Joseph Burrascano, available online - and see if the symptoms apply to you. Lyme Disease is a silent epidemic. There's a good documentary online called Under Our Skin. If you have an infection, it can be treated with antibiotics, and I would recommend also learning about biofilm (google it) - this is the reason antibiotics don't work sometimes.

Drug allergies or interactions? Lots of drugs cause pain in some people, but you are usually NOT warned of side effects. A great site to google is drugs (dot) com. Or google the name of the drug + side effects - and don't just read the pharmaceutical website, read the forums, read what people who actually take the drug have to say. The slick medical websites are there to sell you drugs and present things in the best light possible. Are you taking an SSRI or SNRI antidepressant (just my opinion, but I think some of these drugs actually cause fibro symptoms in some of us).

Undiagnosed spinal issues, like scoliosis, stenosis, compression or herniated disks (have you fallen off horses?) The best diagnostic tool for spinal issues, IMO, is a seated MRI.

Sleep disorders. You don't mention fatigue, but sleep disorders can lead to fatigue and that can lead to pain.

Your doctor should rule out auto-immune diseases.

You need to carefully assess what kind of pain you have and then find the best treatment to target it. When did the pain start, and what happened before that? What kind of pain do you have? Nerve, muscle? Could it be related to misalignment of your body (Physical Therapy could help you.) Are there things that relieve your pain, things that make it worse? Do you have knots in your muscles? (They might be eliminated with lidocaine injections and massage.) I you have serious back pain, I think low dose opiate drugs, carefully monitored and at the lowest possible dose provide the most effective treatment with the fewest side effects. These drugs are specifically targeted to treat pain.
There's a LOT of information on this site. You can plug any topic into the blue search box at the right and get conversations about it. I don't want to write volumes on what's already in here.

All this is just my opinion, based on my experiences (and while I'm not cured, I have managed to relieve a lot of my pain). The doctors just threw antidepressants at me (and they made me WORSE). They didn't bother to help me or diagnose me - I did the research myself and then went in to them with the information. I got better when I quit the antidepressant drugs, cleaned up my diet, got lidocaine injections, acupuncture, massage. I now take supplements to help with my immune system and my energy, along with vitamins and minerals. I also had to learn to pace myself. There seems to be a "fibro personality" that wants to do everything 150% - eventually that catches up with you. You have to slow down, and do less, take care of yourself.

I hope some of this helps. Please feel free to come back with any questions you have - we are all different here, and what helps one might not help another. The exchange of ideas is really helpful. And remember that this is the internet - do your own research, but always work with your doctor's guidance. Hope you manage to shake the down feeling - you CAN get better. Wishing you luck on your journey.


thotchkiss - February 23

Wow! Thank you so much! To answer some of your questions... I hsve pain all over. It started in both shoulders, went to both hands (including numbness and swelling which are now permanent), then both arms, then right knee and then left knee. I have swelling in my knees and lower legs, painful to the touch skin, popping and cracking joints, rash, ear aches, headaches, fatigue, weakness, trouble sleeping (but I have always had that and have been on Ambien and other drugs for years) and it seems that depression had started in. I have been on Celexa on and off for years with no problems and am currently on it with little help as of lately. Been tested for Lyme which showed I had been exposed at some point but it wasn't active. They put me on Doxy for one month o be safe with no results. Through out all this I have had numerous x-rays, MRI's, blood work for everything including Celiac and a nerve test for carpal tunnel. The only thing that showed up was mild carpal tunnel in my right hand. Thus, at least so far, Fibromyalgia. I think contrubuting factors have been numerous physical accidents/injuries, extreme emotional abuse and trauma and I have had the worst past 6 months of my life with more loss than I want to go into. Also, as soon as I found this out last Thursday I immediately started a pain journal and began researching online. I have fund one thing that has helped already... I have my Fiancee wake me up to take my meds early and then go back to sleep so I can actually function by the time I do have to wake up and get ready for work.
All that being said, thank you for your advice and support. I truly needed to hear it from someone, that there is hope and it doesn't have to ruin my life. So, yes I am a perfectionist and over exert myself for almost everything. I guess it's time to slow down and try to give myself a break. It's just hard and frightening considering I am only 32 and that I am going to have to suffer with this for the rest of my life.

Thank you again!




kvc33 - February 25

You have the classic symptoms of Reflex Sympathetic Dystrophy - swelling, rash, painful skin, and pain that migrates from one area of the body to another. It is caused by trauma to the body that can be as small as an insect bite or as major as a bad fall. Check it out and see what you think.


January - February 26

Check out what kvc says. Please also research Lyme Disease. It is simply NOT treated adequately in many cases. If you were exposed at some point, you should have been tested for the many other infections that come with it. Some of the your symptoms sound like Lyme or the co-infections that come with it. Please watch the documentary Under Our Skin and google the book I cited above. Lyme has become a political hot potato for some reason. Most doctors do not know how to diagnose or treat it. One month of doxy is hardly long enough for many Lyme patients - Lyme tends to disappear and "hide" in the body and then reappear later. Please do some research and try to get checked out by a Lyme Literate MD (LLMD) in your area. I've been researching this a lot lately, and most information is wrong. A Lyme support network is your best bet for finding help. There may be support groups in your area. Good luck, and please let us know how you're doing! Take good care of yourself! : )


thotchkiss - March 5

Thank you all! I will be getting tested again for Lyme next week. Otherwise my Dr. still thinks it's Fibro. I am only getting worse still so we are upping my neurontin again today. I am also seeking another Rhuematologist because of many reasons. Primarily though because she had the nerve to tell me she didn't want to take over prescribing my pain meds that I get from my Orthopedic Dr. whom I don't see anymore, because it is too much work for her. Thank you again for all your advice and support.



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