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Not sure I am buying my fibro DX....
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An_241796 posted:
I was DX as having fibro a few months ago by my general practitioner after all tests came back negative. The only real symptom I have is pain. I've had it off and on for a year and it either feels like my skin hurts or a deep bone ache (flu like). Sometimes it is all over, and sometime it travels. It often starts with my fingers, then goes to my elbows, ankles, then my legs. My muscels do not seems to get effected much - maybe just on my neck and upper back sometimes when really tense/stressed. When I am most burning/achy, my knees do hurt more going up and down stairs. When my kids pull my hand, poke me, or jump on my lap, I just have this sensitive pain reaction - not that it screams pain - rather just how it would feels when clothes touch you during a bad flu. As I write this, my toes, thighs, and fingers have an achy burn.

It comes and goes and is only sometimes brought on my physical exercise. For example, I love Zumba. I can go 3 times and feel fine and energized after class and the next day, but the 4th time, I start to feel achy the next day.

I have no tender points and have been tested for that by a professional (my doctor who seems to now a lot about fibro - but she said that is no longer needed for a dx). I also sleep really well, don't get headaches, feel pain free at night and when I wake up, my digestion is fine, mind works, no vision problems, numbness, etc. Really, the only fibro symptom is pain.

I have to wonder if it is depression/anxiety. Even though I do NOT feel a high level of anxiety/stress in my everyday life and am very active, I have to acknowledge that I am going through a very, very stressful period in my life - and have been for a few years. My doctor put me on anytriptylin (25 mg 1x/day) during this period to see if it helps, and besides feeling sleepy, it works OK and has helped space out my painful periods more and make them less painful. I also take 1/4 Xanax when the stress seems higher, even though I don't really ever feel an anxiety attack coming on.

And with that - I do find that I feel pain more when I am stressed. For example, I was feeling fine for about a month, but then my MIL came in for a visit (stress!), and the aches/pain came back during her visit the day after a Zumba class.

Any thoughts? Even if it is either fibro/anxiety/depression, I know I need to take good care of myself. I am just not sure I want to accept the DX of Fibro in my medical records unless that is truly what I have.

Thanks for reading...
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jpet70 responded:
Sorry to ramble - but wanted to ad one more thing. I have been a lurker of this board for a few months. I eat super healthy (vegetarian), and also now take very good vitamins .... including good Vitamin D3.

One more example I would love your take on. I have been feeling the burning/pain for a few days. I had it this morning, but decided to take my son to the park to learn to ride his bike. I must have pushed him up and down a grassy hill on his bike 30 times, then ran beside him for a while. I also went on a mile walk afterward. While doing the biking, I remember thinking I felt no pain while doing it. When hiking, the normal ankle, feet, hand burning started up again. Got home and knees hurt more up and down stairs, had the same level of burning/ache as before the biking, and feel like one might feel that is 41 and out of shape (like 41 going on 80, maybe!) - but I am not bed ridden and utterly exhausted like I would think I should feel with fibro.

Again - can you have activity like this with fibro?

And one more thing (sorry so long!), whenever I do a lot of stretching and use different muscles, usually the next morning I would have those tight, soar muscles, but lately I just feel the "burning" a little stronger and widespread instead.

Thanks for reading - obviously looking for answers.
 
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jpet70 replied to jpet70's response:
Oh geeze - I am the same one as the first poster and the one with the first reply. Not sure why my user name is different? Just did not want to confuse anyone.
 
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booch007 responded:
Good morning,

I would say keep on with your life, maybe use motrin for now if it helps the aches and pains you feel.

I am not a classic FM as well. But I always have burning in the fingers and then some, I have no brain fog and I was working 3 jobs....the ICU, Stress lab and Hospice on call...when I started to get into trouble. Then I got hurt in the ICU lifting a patient.

Alot has changed over the years. For now, don't take the label...I had none for so long. Just know if things change this is still a possibility. My symptoms are from muscle dyfunction and congested tension around nerves. I get entrapments, this is what gives me symptoms.

It can be so subliminal that I really only have that 3 burning toes...unitl I move the muscles around and release and then they are fine. I have always been though worse when I wake up and get younger as the day progressed and then returning to "old" by evening.

I have felt flulike......a good discription. We are all at different levels of dysfunction. I am not a believer of this diagnosis without trigger points or tender zones. So, if you don't have them??? I am with you. But your body not right.

So, keep doing all the good things you can until they figure you out or YOU figure you out and you are better.

It is often that I can do things and be OK after, then I am not able to do it....I know a physical from a doc of pushing and pulling in the exam will exacerbate my issues. I am truly neck centered in my dyfunction. And maybe the neck is really what started the whole mess and it is now systemic.

I may never know the cause and effect of my path. BUT I have learned alot about my body and it's ability and to slow down in life from this. I have learned what chronic pain is to carry everyday. I have mellowed in my life so much...and changed everthing I do to accomodate this new me*.

So, don't like the label? Don't take it. I didn't like mine either and I still challenge it. Just find your tools to be better and stay better....what helps the issues you have and BE IN THE MOMENT with your chldren. Good that tests are all negative but that puts you in a category of "pain disorder" and we are in there...chemically broken (out of wack) labels just help with treatments and as you say "maybe you are depressed?" go there and try that. That alters brain chemistry and helps with the sensation of pain....it may be the little bow you need right now. YOU have to be comfortable, I only used motrin for so long and wouldn't take anything else until I changed and it was necessary.

My job changed and I didn't realise til now that I was doing way too much for my body, not protecting it. But I added meds that helped me contiue to LIVE.

I also see that the med of distraction is here, good for you. Taking him riding and being in the moment with him is also a pain med for you. The pain comes after all is quiet. I love distraction, cheap med for me, works so well, the trick is maintaining a distraction for a long time!

OK, lots of words here....good luck and don't take the label if it doesn't fit. You don't need a label to care for yourself. Keep lurking here, take care of you with good food and supplements and see how it goes. This is a sneaky guy though.......

All my best, Nancy B
 
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xperky replied to jpet70's response:
FM hits us each uniquely. It can also change with time or life changes. I'm glad you are able to stay active. You may have to watch how much you push, so you can be active the next day too.

It's so great you could help your son learn to ride his bike! That must have been fun.
With Compassion,
Margaret
 
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Anon_10089 replied to xperky's response:
Hello-

I can also be pretty active with FM, although I am in pain every day. I usually feel great during the workout, but then get hit by the pain 1/2 hour to an hour later. I'd say figure out what you can tolerate and stay within that level of activity. What really gets people down with FM is that they can't do the things they want. So if being in pain after helping your son on his bike is worth it to you, great!

As a small warning, though, sometimes the pain can build and build and then we can become almost useless. It is a big learning process to figure out how much activity is okay.

As far as the diagnosis goes, it does sound like it could be FM. But if your gut is telling you something else, then keep researching. I think a lot of people that post here have very bad cases of FM and have a lot of different symptoms. Because of that, they feel desperate and in need of sharing (which is a good thing!) But I know people with FM that have it pretty well controlled and can even go months relatively pain free.
 
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jpet70 replied to Anon_10089's response:
Thank you so much, ladies, to your very thoughtful responses. I do appreciate your time and knowledge. The message I took from it is dx or not, just listen to myself and try to live life to it's fullest.


I think that the most difficult part of this is thought of the dx itself - and that fibro never seems to go away and often gets worse.

We have been staying in a resort town this last two weeks. When friends are up and we are laughing and playing, I feel fine. It is the quiet times that I feel pain. Our long days have been filled with long walks, biking, and swimming. I feel pain now from it all, but not what I would take anything for more than a Tylenol. Mostly achey joints, burning hands, elbows, and ankles. I do take it easy and have not pushed myself like I used to for a year (since this started... almost a year ago to date)

A little insight to my year - we have been involved in a long, messy 18 month paperwork situation to bring our adopted daughter home from a foreign country (and it took 3 years to get to that point). This paired with my most difficult teaching year in 15 years has equaled a lot of stress and sadness. I am the type of person that suppresses a lot. People wonder how I got on this year with a smile on my face every day. With this said, I do wonder if what I experience is just stress, anxiety, and depression.

To make it worse, when things feel good - like a good break from school and good adoption news - and I still randomly feel 100 years old with aching, burning body and achey joints, I immediately think it has to fibro. And with it being fibro, I think it will only get worse, and question if I can bring an adoptive child home and be an affective mother to her needs in pain. Hence = my anxiety amps up and my pain gets worse. It is a vicious cycle.

I do have a question. I have looked on fibro board and anxiety boards/literature and see people write about so many of the similar aches and pains. Do most people with fibro have a lot of stress/anxiety/depression? Do you think one or the other is often mistaken for each other and misdiagnosed? It may seem apples to oranges, but it is the "not knowing if this will be with me forever" is the worst thought of all. Maybe I am writing here to search for that certain thing that will distinguish one from the other.

Thanks again for reading.
 
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xperky replied to jpet70's response:
Oh yes, anxiety can make FM worse. Also, anxiety can make anyone feel awful and worn down. Depression can change the brain chemicals that work with pain receptors. That is why certain anti-depressants help some people with their FM pain.

FMers often can't figure out if they are anxious or depressed due to the constant pain, or if they are in constant pain due to anxiety and depression...lol. Well, it's not really funny, but it sure is good to laugh at ourselves.

Plenty of people with illness are good parents. I think it's more about loving and sharing, than how many activities you can taxi the kids to. I bet a lot of people here will tell you what a great diversion their kids are.

In any case, you might find it helpful to take up a stress-relieving activity like yoga, meditation, etc. I love to take a candle-lit bath and let the stress out.

Take it all one day at a time, and remember to breathe and keep smiling.
With Compassion,
Margaret
 
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lisasway replied to jpet70's response:
Hi jpet70,
I can tell you from experience that depression and fibro are not the same thing, I have both. Fibro can bring on depression but depression does not bring on fibro. I believe you have fibro and depression and I think it is highly unlikely that your doctor would diagnose you with fibro unless she was sure of it. Fibro is not easy to diagnose. Fibro and depression are two totally different entities. My depression never caused me the type of pain you describe. Depression is a mental disorder and yes it can cause physical pain but I don't believe it can cause your type of pain. Lately I have been having sharp shooting pain in my toes and feet and I am sure that it is the fibro and not the depression. I think once you get rid of the causes of your stress and anxiety, your depression will leave also. But your pain will remain, that's not going to be affected by your adoption going through. And by the way I wish you the best of luck with the adoption, I am putting you in my prayers.

As far as having fibro for the rest of your life, there is no cure and I have never heard of anyone going into remission. So I think you are stuck with it and that you should stay as active as possible for as long as you can. I have degenerative disc disease as well as osteoarthritis in my lower back which keeps me from being active and I am sure that it has made my fibro worse. Keeping those muscles working is going to help you today and in the long run.

So what I am saying to you is that I think you have fibro and it will be with you for the rest of your life, and that the sooner you come to terms with that the better off you will be. The best plan of action would be to find a pain management plan that works for you, you might even want to get some counseling on dealing with your fibro and taking ownership of it, because it's not going anywhere. The counseling would probably help with your depression as well. I have been depressed for eight years now and don't see it leaving anytime soon, but I believe yours will disappear as soon as your problems are resolved.

I hope that this has helped you in some way and I wish you all the best with the adoption as well. Bless your heart for opening your home and your heart to a needy child.

Lisa
 
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bwood202 responded:
sounds like it, how ever I'm not a doc, but it starts out like that and as years go by everything gets worse. I wish you well, have a bless day
 
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tastefullycarol responded:
Hello, Sorry you're not feeling well. I have been diagnosed with Fibromylgia 9 years ago... I ache really bad and have sleeping problems, also depression and other Fibromylgia systems... The Meds I take for sleep are trazadone ( no side affects). I also take temazapam for sleep. I take Savella for my Fibromylgia pain. How did ur diagnose u with Fibro ? There are 18 tender/trigger points in diagnosing Fibro. You need to have 11 out of the 18. They need to be above the waist and below the waist. You must have matching pairs... Example: if ur shoulder hurts when gentle pressed on the other side must hurt. Same with the knees, etc.. You might want to see a rhuematoligst to see if you have Arthristis . I also have been diagnosed with Psoratic Arthristis . It's painful. That affects my fingers, wrist. Knees, toes and lower back and my shoulders. It takes a good Rhuematoligst to diagnose these conditions. I would go to the Rhuematoligst first and and have you checked. My new Rheumatoligist examined me very thoroughly and found this painful Arthristis that my regular didn't see. Hope this makes some sense to you. Fibromylgia doesn't move around all over.. It needs to be consistent .. I wish you luck ! Hugs... Also have ur vitamin D and thyroid checked !
 
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sweetlysurrender responded:
You may have myofascial pain syndrome. I was diagnosed with this after a routine L5 disk repair. Doctors often list it as fibromyalgia for insurance code purposes.

There is a lot of good information at www.myofascialrelease.com, including a list of myofascial release therapists, some of whom may be in your area. I am one of the lucky ones who have two therapists nearby.

Myofascial release therapy has been a godsend for me. I am close to resuming a pretty normal life; two years ago I could not have even imagined that because of the level of overall body pain I was experiencing.

I also believe that my myofascial pain really started after being on high doses of antidepressant and antianxiety medications; doses so high that I was, for the most part, bedridden for more than 4 years. This is why I cringe when I read on this blog the numerous types of psychiatric medications that a lot of people with fibro/pain are taking. I do not believe these are necessary. I ended up on Social Security Disability because of this and have lost several years of my life.

I have good luck with low doses of Tramadol and muscle relaxants when necessary, both of which are no problem to manage when I return to work. I also strongly recommend working with a pain management specialist.
 
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rudyandirmouse responded:
Hi and Welcome. Linda R here and I can tell you that your first symptoms are the same as mine were back when, 30, years ago. Before I got the fibro DX. I was in collage and these symptoms just stopped me in my tracks. I had such flu like symptoms, tired, achy and felt like I had stomach issues, so many things going on that I went to the doctor for weeks with no relief.

And the skin burning, the pain OMG, the pain. was awful that I had to get flannel sheets just to sleep at night. And I wore shorts most days because the material on my jeans was killing me. But aside from those symptoms I felt just fine.

After months of these symptoms with no help from doctors I got used to them and got on my life. I went 2 years with these symptoms on and off before I got the fibro DX. I felt relief to know what I had had a name but was devastated to know I'd never get over it and it could get worse. But after a few months of feeling sorry for myself I got up and got my life back.

Since there is so much info out there about this illness, and yes it is a real illness, I know that it causes pain at the nerve endings and can effect any part of the body, It also mimics Lupus in pain and disruption of one's life. And I believe one symptom that may bother your body may not bother mine and vise versa.

If you don't feel this is what is bothering you then get a second opinion. I have gotten the fibro DX 3 different times, by 3 different doctors in 3 different decades.I know it's what I have, but if you feel it's not what you have, do go and get retested by another doctor who works with or is knowledgeable about fibromyalgia.

Gentle hugs out to you, Linda R.
 
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booch007 replied to xperky's response:
Margaret I so wish we had a LIKE button!...Nancy B
 
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booch007 replied to rudyandirmouse's response:
Linda.....a LIKE button for you too!...Nancy B


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