Anyone else have fibromyalgia?

[stgiles16]

Just curious. Sometimes I wonder how much of my knee pain is mechanical and how much is from the fibro. I was surprised to see that fibro is related to arthritus (I have OA in both knees)
If you have fibro, how are you treating it and does it tend to effect your knee? The ironic thing is, the dr thinks my fibro was caused by the repeated trauma of surgery on top of surgery. Here I was, trying to get well and made myself sicker. ugh.

thanks for any info
missy

[kath]

Hi Missy...I have a family member with fibromyalgia, but I don't know enough about it to answer your questions.  OA is the breakdown of the cartilage and bones and I don't believe is related to fibro.  However, fibro can mimic a lot of the symptons of RA.  Here is some info I copied from another site.  And then I'll leave it to someone with experience with fibro to help you out!  ..kath

Osteoarthritis

The most common type of arthritis is osteoarthritis, or OA.  OA is sometimes called degenerative arthritis because it is caused by the breakdown of cartilage and bones, causing pain and stiffness. OA usually affects the fingers and weight-bearing joints, including the knees, hips, back and neck. It affects both men and women and usually occurs after age 45.

Rheumatoid Arthritis

In rheumatoid arthritis, or RA, an abnormality in the body's immune system causes inflammation of the joints. Inflammation begins in the joint lining, or the synovium, and over time leads to damage of both cartilage and bone. Rheumatoid arthritis often affects the same joints on both sides of the body.

Fibromyalgia

Fibromyalgia is a disease that causes widespread pain and distinct tender points, which are places on the body that are highly sensitive to touch and produce pain. People with fibromyalgia usually have fatigue, disturbed sleep and stiffness. Fibromyalgia is a common condition that usually affects women and it does not cause muscle or joint damage.

[SallyW]

I was dx'd with FMS/CFIDS about 15 years ago (my then PT said she hadn't seen anyone with muscles that messed up from FMS - and she was a specialist in the disease). The research is constantly changing and controverisal - I haven't seen anything "solid" about causes, etc. Your FMS might be caused by the trauma of surgery...last I heard, they considered FMS/CFIDS to be caused by many things - might be a virus for some, physical stress for others, food sensitivities for others. But whatever - the reality is that you seem to have it - nothing to do but go forward.

Several of my medical "friends" (a PT and sports medicine doc) have theorized that the FMS has weakened/damaged my muscles, leaving me suseptible to more orthopedic hassles than other people might have. It's possible - I've torn and damaged more muscles than I knew existed! Arrgh! That might contribute to bad knees...who knows?

How do I treat FMS? Honestly, I think attitude has a great deal to do with good "treatment". People who think about having FMS, who think about their discomfort, who consider themselves as "suffering" from FMS will probably be impacted most by it. I'm not saying that I think FMS is "in your head", nor am I trying to minimize the discomfort. It's real and it can hurt very much! But scientific studies have been done that show our minds have a finite ability to feel pain - if we focus on other things, we won't think about the FMS discomfort that much...once I was in the middle of a major CFIDS/FMS blow up - migraine, blown up muscles, the works. So I celebrated (that I was alive, that it was a gorgeous day...) and went for a 50 mile bike ride! It was a wonderful day, and when I got back, I felt more alive and energetic than I could have imagined! I'd had a terrific day, and I hadn't given in to the disease.

So - that's how I treat the disease - I hike, backpack, snowshoe, chop wood and work on our farm. When I've had knee problems, I tend to have a difficult time in PT - my last PT said that I've developed a high tolerance to pain as a result of my FMS/CFIDS - makes it difficult for me to know when to stop doing PT and let myself heal. I also do not follow a special diet - I eat what I want (which usually involves a fair amout of chocolate). If my muscles are very sore, I often take long, hot showers. But I really don't think about FMS...

[lizbeth97341]

I was diagnosed with FM six months ago. I have suffered chronic knee pain off and on for over four years. I have always been very athletic from high school through my late 30's, but had to stop a few years ago when I hit 42. I have had three surgeries on my R knee (torn meniscus) over the years.. I take Mobic 15mg qd now, and on the advice of my arthritis specialist, take 650mg tylenol four times daily. I know it's alot of tylenol, but it really seems to help. He tells me to walk every other day, and I also go to aqua-aerobics three times a week. I do get relief from knee pain about 75% of the time now, but I can really tell when a storm or rain is coming...I don't care what anybody says, my knees know !!! I also take a sleep aid prescribed from my DR., which helps break the pain cycle of FM.

Ellie in Depoe Bay, OR

[JuliesMom]

I have a couple questions/statements about fibromyalgia.

First of all I want to say that if you are feeling any pain you deserve to have pain relief and not be treated as if it were 'all in your head' or not serious.
I just had to say that cause I am finding to many people that don't take it seriously.
Several years ago I was told that I had fibromyalgia. I was put on so many different meds, etc. and nothing worked. I finally decided that I would go to someone out of town (a big city) and was told that I did not have fibromyalgia. It makes you wonder who do you believe and what to think.
The doctor in the big city was concerned because I have had a consistently elevated Sed Rate for several years and it has more than doubled as the years have went on. She has said again and again that people with fibromyalgia do NOT have elevated Sed Rates.
For those of you that know about fibromyalgia and/or have fibromyalgia could you please let me know what you think of that theory and whether or not you have an elevated Sed Rate. For those that do not know when I say Sed Rate I am referring to Sedementation Rate. It looks for inflammation with a blood test.
I have been through so many meds and nothing works for my pain except narcotic pain meds. The doctor in the 'big city' is the one that found that I have scoliosis and degenerative arthritis in my back. That does not explain my other pain but it is something.
In my personal opinion I do not believe that fibromyalgia is completely figured out and all. I am not saying it is not real; just that there isn't enough known about it to say for sure about it if that makes sense. I am not trying to offend anyone or say their pain is not real because I for one know that for the people that really are in pain we want more than ever to relieve that pain and get back to a life that is functional and fun and enjoyable. Functional is the keyword.
Anyone with suggestions, advice, etc. is more than welcome to sound off here about my post.

Shelley

[stgiles16]

Shelley, I totally agree that fibro is misunderstood or that we dont know enough about it. I have been on pain killers off and on for 4 yrs for knee and ankle injuries suffered in a car accident. I went to my GP in Feb of this year with a list of problems (symptoms) that I thought were the result of side effects from the pain meds and different strange pains. He did tons of blood work but I cant answer your question on sed rate because I didnt know to ask. He came back with the diagnosis of fibro. When I started researching it, it was an eye opening experience. It does sound exactly like my life. My mom is not convinced that this is my problem but hey, she doesnt have to live with the pain and fatigue and those awful brain fogs. I am now on pain meds everyday (I was anyway for my knees, but we changed the meds). I think that we have found a combination of meds that helps me function a little closer to normal.

If you are not convinced that your new "big city" doctor is the one for you, get a third opinion. It is great that he figured out your back problems but what does he say about your other symptoms? Back pain DOES NOT  make you have brain fogs,,,,,,

good luck
missy

[smf]

Had this for about 20+ years with many names. There have been times even fkesh so sore it hurts to turn over in bed. The pain is real and the brain remembers even simple things like the weight of a child in your arms or the work you did while pulling weeds from your garden. The more you use the muscles the more pain you experience. It is not from deconditioning: it is far more sinister. Help is found in heat. If you can stand it. I have worn out more hot water bottles over the years than than Carter has liver pills.( I am sure you may have heard that one!) All in my family are in medical field so I am in excellent hands. They all agreed with me Heat is best treatment for these episodses. Then rest good  peaceful rest and long warm tub baths in baking soda. Drink lots of water and no coffee or tea or  sodas!  Water. Water, WAter!!!!!!!!!!!!!
Stress agraviates the symptoms so stay cool and calm. Think about changing your life style and
my favorite Scriptures sums it all up...... Read Isa 43: 18,19 ( .....Forget the former things......Behold I will make springs in the desert) and Isa 43:2  ( When you pass through the rivers  you will not drown and when you go through the fire you will not be burned)

[The KNEEguru]

I did a lot of reading about FMS a couple of years ago - all on the net, not the professional journals. My interest arose because I had had two very distinct episodes where I suddenly developed problems which I could only fit into the descriptions of this syndrome. I saw no medic (physician heal thyself) and had no trigger point examinations other than from myself.

The first followed a flu-like illness which was going around the village. I woke up one morning and found I could not bend any of my fingers. I could not remove my ring from my finger. I could barely walk because my ankles and feet felt so sore. I thought 'rheumatoid arthritis', and was terrified. My ex had been doing some interesting reading on 'amoebae' as a possible cause of RA, and after a few days I empirically put myself onto tetracyclines. The symptoms regressed and went away.

A neighbour called me a month or so later because she had had the identical problem from about the same time as me. Her doctor was baffled and she had had no response to prescribed medications. I told her what I had taken. She asked her doc to try it, and lo and behold she got better.

Some six months later the nurse from another practice phoned to say that she had had the same problem, and the doctor she worked for wanted to know the story (village chat gets around), as this nurse was already developing some bony deformity fairly characteristic of RA. She, too, went on the tetracycline antibiotic, and the symptoms regressed but she was left with some deformity.

We all put this down to an infectious agent as a trigger for RA. Very interesting it was.

No more problem for 20 years. Then a period of extreme stress overwhelmed me with the disappearance and suicide of my son. I took off in a campervan to France to get away from the stress, and a few days before I returned I was bitten by something on my neck. It itched and itched for ages. Not a mosquito. Again a sudden onset of stiff hands and feet, usually early morning. This time I took no medication. It persisted.

At home I had trouble going down the stairs in the morning.

I started reading around the topic of early morning stiffness, and stumbled across the FMS literature. I completed a questionnaire, and discovered that a bunch of irritating symptoms I had were all classical features of the FMS group - chronic problem with falling asleep, periods of profound fatigue, restless legs at night, skin very sensitive to household products (soap etc), proneness to thrush.

I went this time to a doctor who poo poo'd the idea of FMS/RA brought on by the bite. But I did go onto a course of antibiotics for another problem, and they did not help the symptoms - which persisted for about two years and then just gradually diminished.

The literature was very confusing, with many 'miracle cures' being offered. I gathered that what I had experienced was very mild compared to some patients who can be virtually confined to a wheelchair. But I extracted what seemed a plausible explanation.

The underlying problem appears to be related to the concept of a gut lining which allows certain substances to be absorbed, which would normally be blocked. These trigger a kind of allergic response in the body which then counterattacks, but unfortunately cannot distinguish between the absorbed products and some of the body tissues themselves. The fungus candida seems involved, by virtue of colonising the gut and causing it to allow these abnormal substances to cross. Heavy metal deficiency, especially selenium and iron, seem to be associated and to aggravate the problem.

Normally the body fights the candida, but extreme stresses (emotional, infection etc) seem to allow the candida to run rampant again.

That's just what I read, more or less.

KNEEguru

[stgiles16]

First of all Guru, I am terribly sorry for your loss.

I have read that their are two types of fibro, one is from stress and the other is the results of trauma. My dr says that mine was triggered by trauma (7 surgeries in the space of 3 yrs) He says that my body just could not handle the trauma.

I take many meds but not antibiotics. I tested negative for RA but do have OA in the knees and right ankle (due to trauma and surgeries).
I find it ironic that while trying to get well, I actually made myself more sick.

I read on one website that OA, RA and fibro are somehow related. Have you ever heard that?

Are you saying that after two years your fibro like illness disappeared? I can only hope that it happens that way to me.

thanks for the response
missy

[kath]

KNEEguru...you have been through so much...I too am so sorry for the loss of your son.

I was wondering if you ruled out Lyme disease after your bite?

Missy, I've read that there is no link between OA and fibro.  I've also been told there is a link between trauma (car accidents, surgeries) and fibro.  It's an interesting but confusing disease.

kath

[The KNEEguru]

Hi
I certainly was in a tick area (mid France) - but I believe fever is a fairly regular feature at the beginning, and I had no fever. Certainly a possibility and it can mimic fibro - http://www.lymediseaseassociation.org/ABCsLYME.pdf. Lyme disease is much less common in Europe than the USA.

It is all interesting stuff though. I suspect that eventually with enough research even fibro variants will each be found to have a discrete cause.
KNEEguru

[purplestars1881]

Hello All...

I am a 24 yo female who was diagnosed with FMS about a year and a half ago. My pain now isn't overwhelming, but as a child and teen it was horrible. They did all the rheumatoid tests and those came back fine. The pain that I have now is very much achy, sometimes with dull, numbing pain, particularly at night if I have done a lot...enough to make it difficult to fall asleep.

When I started my PT for my knee, I never told the PT's that I have been diagnosed with FMS. In fact, I didn't tell my OS either. Now, I do recognize that this may not have been the smartest of moves, but my fear was that I wouldn't be taken seriously and I knew my knee problem was more than FMS, and in fact I was right.

It stinks to not be able to be upfront about these things, but sometimes to get quality care, I feel I have to monitor what I say...I have found that medical professionals can sometimes already have their minds made up on certain topics...

Heather W.

[geno71853]

I was dx'd with FMS/CFIDS about 15 years ago (my then PT said she hadn't seen anyone with muscles that messed up from FMS - and she was a specialist in the disease). The research is constantly changing and controverisal - I haven't seen anything "solid" about causes, etc. Your FMS might be caused by the trauma of surgery...last I heard, they considered FMS/CFIDS to be caused by many things - might be a virus for some, physical stress for others, food sensitivities for others. But whatever - the reality is that you seem to have it - nothing to do but go forward.

Several of my medical "friends" (a PT and sports medicine doc) have theorized that the FMS has weakened/damaged my muscles, leaving me suseptible to more orthopedic hassles than other people might have. It's possible - I've torn and damaged more muscles than I knew existed! Arrgh! That might contribute to bad knees...who knows?
     A word of advice,
Fibro is the doctor telling you that he doesn't know what is wrong.  Go to the sit on the internet called sweet poison. You will find out some interesting things there.
                                                              Geno
How do I treat FMS? Honestly, I think attitude has a great deal to do with good "treatment". People who think about having FMS, who think about their discomfort, who consider themselves as "suffering" from FMS will probably be impacted most by it. I'm not saying that I think FMS is "in your head", nor am I trying to minimize the discomfort. It's real and it can hurt very much! But scientific studies have been done that show our minds have a finite ability to feel pain - if we focus on other things, we won't think about the FMS discomfort that much...once I was in the middle of a major CFIDS/FMS blow up - migraine, blown up muscles, the works. So I celebrated (that I was alive, that it was a gorgeous day...) and went for a 50 mile bike ride! It was a wonderful day, and when I got back, I felt more alive and energetic than I could have imagined! I'd had a terrific day, and I hadn't given in to the disease.

So - that's how I treat the disease - I hike, backpack, snowshoe, chop wood and work on our farm. When I've had knee problems, I tend to have a difficult time in PT - my last PT said that I've developed a high tolerance to pain as a result of my FMS/CFIDS - makes it difficult for me to know when to stop doing PT and let myself heal. I also do not follow a special diet - I eat what I want (which usually involves a fair amout of chocolate). If my muscles are very sore, I often take long, hot showers. But I really don't think about FMS...

[5150knees]

WHAT A COOL SITE!!  I just was surfing the net (cuz my stupid body just won't let me sleep right now...especially my knee! ), & while reseaching my latest list of MRI results & surgical needs I happened across this link & here I am!   Of course I had no idea where to start, since there are so many catagories , but when I came across the catagory for Rheumatic issues & this post I just had to drop a note!

I was diagnosed as a child as having JRA, then with FMS in college (about 20 years ago) & then finally most recently (5 years ago) diagnosed with Behcet's.  I have suffered since infancy with all kinds of severe rheumatic related joint & muscle (and organ) issues that have resulted in causing or worsening injuries and defects over the years.

Suffering through a rheumatic illness is hard enough, but when an injury occures (especially to a joint like the knee), it can be particularly frustrating, painful, & disabling...taking the enjoyment out of even simple things that a normal person takes for granted, but a rheumatic usually can barely endure.

I won't climb on a soapbox to tell you all all of my ills (that would take wayyyyy tooooo longgggg... )...suffice to say that the reason I'm hear is cuz I'm going on my 5th knee surgery (a pretty major one based on what the MRI actually did show...and I've never yet had an MRI or dye test that has given me the big picture...and when all my PT and her colleagues could say was "that's the worst totally blown knee I've ever seen!!" (just after seeing my Lachman's test from 30 ft away)....hahahaha!!).  However, I have suffered with (and learned a great deal in the process) FMS & Rheumatic diseases for over 37 years now, so suffice to say you aren't alone out there.

In closing...for those with FMS...I don't know if you've looked them up, but www.fibrohugs.com is an awsome support group for those of us with FMS.  Knowing there are others out there that suffer the same can really help keep someone from feeling isolated and developing severe depression.  Just a footnote!

I'm glad to be here and I hope maybe there is some good positive info around here regarding some of my current knee issues and questions I have...If not, then maybe I might be able to at least help someone else that feels alone not to be so down!!

Time for a hot shower to melt some of my pain so I can finally go to bed!  Have a great night!

[stgiles16]

Welcome to the site. I have not seen that fibro site but do have another one that I enjoy. It has chat that has been a lifesaver when I am up all nite and cant sleep. If you want the site, send me a private message and I will send it to you.

I have only been dxed with fibro since Feb of this year and it is tough dealing with it along with knee injuries.
I hope that you find some answers to your knee questions. The people on this site are very supportive and helpful.
Again, welcome

missy

[The KNEEguru]

These are superb articles, albeit a bit technical for some of us  -

1 Fibromyalgia - the muscle pain epidemic - http://www.healthy.net/scr/Article.asp?Id=587 (Part 1)

2 Understanding and treating chronic fatigue and fibromyalgia - http://www.healthy.net/scr/Article.asp?Id=588 (Part 2)

3 Chronic fatigue / fibromyalgia - http://www.healthy.net/scr/Article.asp?Id=589 (Part 3)

4 What treatment seems most effective in treatment of fibromyalgia - http://www.healthy.net/scr/Article.asp?Id=590 (Part 4)

[daisycake123]

I think there are a lot of people in the world Dx as fibro by a Doc that just put a label on someone w/o doing proper testing, I have been tested 2X and each one was different. I have sore point all over my body as I have a bulged disc in my neck and have nerve apin from that ad have srthritis in my lower back as well as a former fusion and my siatic nerve is always tender.  Have had knee pain and swelling for over a year and they Doctors dont know what is wrong, OA, RA as my sed rate has been elevated for over a year.  I think is is just easier to labe someone that hurts and want help with pain to just call the fobro and problem solved and not look to hard. JMO  But with what have have ead on the subject the fibro is diagnosed by all blood test being normal and a certain amount tender spots out of a certain number and that tender point could be very subjective.

[stgiles16]

actually, the tender points are very specific. i do agree that fibro is Dxed too often but it is a true disease. also, most people who have fibro also have a second autoimmune disease. i have fibro and RA and would gladly give both up at any time lol. latest verdict is also neuropathy but i dont know much about that one yet, have not done much research. whatever they call it, i live in pain 24/7.

[jt801]

I was diagnosed in 2001-for some reason i suffer from the fatigue, sleep problems, and tender points-but not the widespread pain which is the most prominent charactaristic of this syndrome. I do get abnormally sore muscles after heavy bouts of activity. I have continued to stay active despite the fact that i get tired way more easily than i should. What i would like to know is if fibromyalgia weakens your cartilage as i am suffering from cartilage loss in several areas of both knees and have had a microfracture surgery already. Not only that-i know there is a trigger point on the outside back part of the knee, which is the exact location where my mfx was performed. Many days i have identical pains in that area on both knees, so i cant decide if its the cartilage issues or the FMS causing these pains.