newly diagnosed could use advice

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trevor

New member
Joined
Aug 30, 2016
Messages
4
Reason
DX FIBRO
Diagnosis
08/2016
Country
CA
State
Canada
Hi everyone. I have been going through aches and pains for awhile now. Always thought it was arthritis. It has been getting bad lately haven't been working. And I'm losing strength it seems. I am not sure what to do, or expect from this. Feeling quite alone these days.
 
Hi trevor, welcome
Fibromyalgia can be really overwhelming at first. It is a difficult condition to understand, even when you are the one experiencing it. It's good to learn as much as you can about it.

Personally, I had to learn to think about pain differently. It is really natural to connect pain with harm or injury. But with fibromyalgia pain is often just pain. Once I got that ss
traight in my head, iI could cope better.

Fibromyalgia affects us all a little differently. It may take some trial and error to find out what works well for you. Keeping a logbook of your symptoms can help you figure that part out.

Generally, it helps to get good sleep, reduce stress, get some mild exercise several times a day (if you can), and spend time doing something you love every day.

Hope this helps!
 
Hi Trevor ,DK is right,it's a hard illness to cope with.and learn how to deal with the loss of your old life.
The more u fight it the harder it is to adjust .it does not mean life's over .it will just be diffrent.
What meds do u take.and how does the illness affect you?.
 
Well. From what I've read on others posts. Mine seems to be a little different. I've had bad knees for basically my entire life. This thing that everyone calls fibro fog I was called a drug addict without ever using drugs because I looked space alot of the time. I feel the two are connected. Those two things have been with me for as long as I could remember. Putting things places. Blaming others for them. I had been out of the doctors my whole life trying to figure out my knees and had given up with no proper testing being done. I had also gone back and forth for bouts of anxiety and depression. Now over the past year or so my knees aren't so bad but I rest with a pillow knees can't touch. It went to my ankles about 6 months ago so back to the doctors I went. After 6 horrible months of not being able to do much or doing it in incredible pain. They have diagnosed me with fibromyalgia just on time for it to start affecting my basically my entire body. Joint pain in the hands knees and ankles. Mucle pain in the upper body and ankle. slight skin problems, mental issues, energy problems, sleep deprivation. I had to write it down to think of symptoms. Hope it's not too much to read.
 
Well. From what I've read on others posts. Mine seems to be a little different. I've had bad knees for basically my entire life. This thing that everyone calls fibro fog I was called a drug addict without ever using drugs because I looked space alot of the time. I feel the two are connected. Those two things have been with me for as long as I could remember. Putting things places. Blaming others for them. I had been out of the doctors my whole life trying to figure out my knees and had given up with no proper testing being done. I had also gone back and forth for bouts of anxiety and depression. Now over the past year or so my knees aren't so bad but I rest with a pillow knees can't touch. It went to my ankles about 6 months ago so back to the doctors I went. After 6 horrible months of not being able to do much or doing it in incredible pain. They have diagnosed me with fibromyalgia just on time for it to start affecting my basically my entire body. Joint pain in the hands knees and ankles. Mucle pain in the upper body and ankle. slight skin problems, mental issues, energy problems, sleep deprivation. I had to write it down to think of symptoms. Hope it's not too much to read.
 
Hi Trevor, find a primary doctor that listens and communicates with you as treatment of fibromyalgia if you choose the medicated route takes a lot of adjusting and monitoring.



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My knees pop out,I can't explain the pain.one Boxing Day I waited six hours for help.dad rung 999. And they said can she walk in.lol u can't move .ive had ops .im due for more.but the dr who did my op ,took X-rays and said there's no reason on earth they should come out.so go figure .
I get bad feet and leg pain to.and the stiffness I wouldn't wish on anyone.
 
My knees pop out,I can't explain the pain.one Boxing Day I waited six hours for help.dad rung 999. And they said can she walk in.lol u can't move .ive had ops .im due for more.but the dr who did my op ,took X-rays and said there's no reason on earth they should come out.so go figure .
I get bad feet and leg pain to.and the stiffness I wouldn't wish on anyone.

My knees have popped out since I was a kid, patellar dislocation is a gentic issue that tends to run in families, but can occur spontaneously in some individuals and should be traditionally treated with physical therapy, braces or support, and worse case surgery. It can also occur in people with joint hypermobility syndrome or in EDS (ehlers danlos syndrome, typically hypermobility/III or classical).

Since I learned the techniques in PT to properly balance the muscle strength in my legs, I have not had an issue with them popping out. I feel I was quite lucky my issue could be treated so simply, the pain was agonizing I remember wanting to vomit and turning a different color when it happened, especially if it was stuck and didn't want to go back in.

It most likely is related to a collagen problem of some kind (there's several others besides EDS, including some autoimmune CTDs) which are related to certain gene sequences sometimes, but other connective tissue components could be at play. I don't feel this in particular is a fibro related symptom, but likely an additional problem or layer in some people.



Well. From what I've read on others posts. Mine seems to be a little different. I've had bad knees for basically my entire life. This thing that everyone calls fibro fog I was called a drug addict without ever using drugs because I looked space alot of the time. I feel the two are connected. Those two things have been with me for as long as I could remember. Putting things places. Blaming others for them.

I had been out of the doctors my whole life trying to figure out my knees and had given up with no proper testing being done. I had also gone back and forth for bouts of anxiety and depression. Now over the past year or so my knees aren't so bad but I rest with a pillow knees can't touch. It went to my ankles about 6 months ago so back to the doctors I went. After 6 horrible months of not being able to do much or doing it in incredible pain. They have diagnosed me with fibromyalgia just on time for it to start affecting my basically my entire body. Joint pain in the hands knees and ankles. Mucle pain in the upper body and ankle. slight skin problems, mental issues, energy problems, sleep deprivation. I had to write it down to think of symptoms. Hope it's not too much to read.

Brain fog, pain, and fatigue tend to be the top 3 for fibro symptoms people are most incapacitated or limited by.

It is interesting your knee pain has "spread" and seems to be symetrical from what you describe. I wouldn't myself necessarily settle with just fibromyalgia as a diagnosis in your case, but I understand how taxing and consuming pursuing further diagnosis can be so I don't mean that as a judgement. If you have money and a smart phone I highly recomend getting those mini stick-on trackers and the app that goes with them, several companies make them now. The problem I would have with this is I tend to lose my phone. :)

I don't tend to think of fibro as typically spreading in this type of pattern you describe, so I think you may be right that you are either atypical or fibro is just part of a more complex picture. When you described your knees and ankles my immediate thoughts were autoimmune arthritis types (RA - rheumatoid arthritis, or UCTD - undifferentiated connective tissue disease), or perhaps CRPS (complex regional pain syndrome, sometimes called by the old name of RSD, or CPS central pain syndrome). CRPS does spread from the origination site to other areas, though the whole body doesn't appear to be that? common. Rheumatoid arthritis tends to be symetrical and spread from a more central joint to a more peripheral joint... UCTD is a disease defined by having features of multiple connective tissue autoimmune diseases but not fitting any one disease presentation exactly, so it too can have the symetrical feature.

*Note I am not a doctor, but am suggesting topics for individuals to research in relation to their symptoms or ask their doctors about.
 
Hi everyone. Thank you for the advice. I personally do not think that I just have fibromyalgia. It is still a recent diagnosis. All of this information is extremely helpful. I forgot to mention they had prescribed me cymbalta a low dose that seems to work half decent. I do intend on pursuing further diagnosis. Followup is tomorrow. My knees in particular worry me because the pain used to be localized mainly on the interior of my knee and now it seems like it is affecting the muscles on the backside of my leg. Hopefully get to the bottom of it all. Just staying positive. I feel for everyone with the leg issues. Mine have never been ad severe as surgery or a hospital trip. Have just left me immobilized and soar for weeks/months at a time. Wish all the best for all of you and thank you very much for your input anymore is greatly appreciated
 
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