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7 Replies
ChroniclyCrazy - October 4

I'm not sure this is the best way to "diagnose" anything, but my wife has been suffering from a variety of problems for years now. About 10 years ago she was diagnosed with an auto immune disorder, but like many of those they seem to be ambiguous. They always cover a wide variety of things.

Trouble is when you have something like that you can sometimes lose track of what's going on with your body when dealing with the day to day things.

I'm looking at fibromyalgia and seeing so many things that match what she goes through.

What's most recently painful and something she's been dealing with only recently (on that 10 year scale) has been some of what I'd say is joint type pain. Well, let me give you a quick run down of what she suffers from and how long she's dealt with it all..

Nausea - she's dealt with this for years and routinely takes antinausea medicines on a daily basis.

Fatigue - another common thing. If she ever has a good day or two, it's almost always followed by a few where she's very limited in activity, spends most of those days in bed.

Urinary problems - often ahs trouble urinating. They don't think she has a lot of UTI's but when this flares up she gets bad enough where she has to cath herself.

Chronic Headaches - not as chronic as they once were, one of the few things that seems to have gotten better over the years, still gets a nasty one from time to time (a few a month?)

Memory - it's now a running joke that if something is not attached to her it's lost. She literally can have something one minute and not have a clue where to find it the next. Everybody does this from time to time, but this is constant. Once in a while (rarely compared to losing track of things) she has a serious issue feeling like she's able to say things.. it doesn't come out so wrong, but she says that it feels like something is not quite right. Concentration and focus are almost always lacking.

Sensitivity to smells - has that, seemed to be more acute when headaches were around, but even to this day my kids know better than to put any strong deoderants or perfumes on (Axe.. ah, that's a killer...)

Chest Pain - feeling like her chest hurts, we had this checked out she had fluid around the heart and still does and blames that when it flares up, but the fluid is always there, the pain isn't.

Breath trouble - not so common, but sometimes she has trouble catching her breath when doing nothing.

Anxiety - OK ..she's always been anxious it seems, but who wouldn't with all this going on?

Swelling - sometimes she retains fluid in weird ways. Swollen stomach, or feet/hands.. sometimes when it's doing this the urinary problems peak as do some of the other symtomps.

Joint pain - this one is newer and we thought it was related to the swelling, but they don't always go hand in hand. It's to the point when this flares up (And it seems to do that more often these days) that she has a side that might hurt a LOT when she wakes up.. she will have a hard time moving her right elbow, leg and maybe hip.. left hurts, but no like the right. It's painful to the point where I have to help her move and she's nearly tears.

Back pain - sure she's had a fusion and her lower back may always be an issue (L5-S1 fused, but L4-L5 has a tear and hurts..) but this is higher up in the back.. doesn't fit the bad discs... and it makes her miserable as well. Can't be from being too active either as it's doing this when she's is able to do very little.

Think that covers it. Most symtoms have been around for a while. The joint pain (if it's even really the joints) is newer, at least to the degree it is hitting her now.

Love to hear thoughts of those more familiar with this.


Fantod - October 4

Welcome to the board. There is no joint pain associated with Fibromyalgia (FMS). Joint pain for most people with FMS comes from an underlying condition like osteoarthitis. Swelling in relation to FMS is usually due to medication issues.

Nonetheless, I would have an evaluation done by a firbo-friendly rheumotologist just to be sure. It is rather difficult to sort everything out just from your description. You can find one by using the National Fibromyalgia Association website or calling your local hospital physician referral service. Take a complete copy of her medical records with you including any recent bloodwork to save time and money.

Chronic pain has been proven to cause cognitive problems like memory loss. If you are interested in learning more about chronic pain and how it is currently managed (or not), buy "The Pain Chronicles" by Melanie Thernstrom. It is a pretty fascinating read.

The chest pain may actually be costochondritis which is common among people with FMS. The hip pain could be bursitis which is also another FMS "perk."

I have degenerative disc disease with an annular tear in once of discs. It is very painful. The pain your wife is experiencing in her upper back may be referred pain from the lower area. Has she ever seen or been evaluated by a pain managment specialist? Again, you can call your local hospital to get a referral. I'd start with the rheumy first and then see the pain specialist.
I happen to have both and they work in tandem with one another.

Has your wife had a complete evaluation with testing for allergies? Most FMS patients have multiple sensitivies of one sort or another but it sounds like she is hyper sensitive. I think you should seriously consider seeing an allergist too. Her headaches could partially be due to this problem.

Have you considered seeing a functional medicine specialist? This is an MD with an interest in holistic medicine. They use both conventional and holistic medicine as a treatment protocol. The approach is pretty different from standard medicine. I have a functional medicine specialist who has figured out more about my situation in the shortest amount of time than the rest of my medical army. Typically, they run the standard bloodwork and also some specialized testing. The tests mine ran came up with a list of allergies that were actually triggering my immune system without any overt symptoms like a rash. At the time, I was experiencing some nasty leg pain which we thought was back related. It turns out that I am highly allergic to a form of green food colouring that was in my shaving gel. Jettison the shaving gel and the leg pain improves a lot - go figure. Just one example of what is possible with a functional medicine specialist.

And, what if anything is your current doctor doing about any of these problems?

The back pain can be treated with Flector Pain patches (NON narcotic) or a topical cream with lidocaine added like Ketoprofen. Also, Curamin (the spice) which can be purchased in a higly purified capsule form is an effective pain killer. I use the brand manufactured by Terry Naturally which you can find online or in any decent health food store. I take my prescription meds and use the Curamin too for breakthrough pain. A TENS unit is another fairly effective solution. Those are just a few of the options available to her. If your doctor is not suggesting any of these things, I'd be more than a little annoyed.

Overall, I'd say it is time to get a fresh set of eyes on the situation. Your wife deserves a better quality of life. You are commended for thinking to ask if Fibromyalgia might be part of the problem. Take care and let us know the outcome.


axxie - October 6

Hi ChroniclyCrazy

I'm no doctor but sounds to me, what she could have is a few problems and not just tied to one real one.

I tend to side on the opinion of Fantod on this one. Fibro people don't have joint problems, so I'm thinking that what she might have is: Rheumatoid arthritis typically begins in middle age. I guess that your wife is middle age, by what you have written on your blog.

Rheumatoid arthritis usually develops gradually, but some patients experience sudden onset of symptoms: one day they are perfectly healthy and the next they are dealing with rheumatoid arthritis. Symptoms commonly associated with rheumatoid arthritis include: Joint pain, joint swelling, joint stiffness, and warmth around the affected joint. Morning stiffness that lasts one or more hours. symmetrical pattern of affected joints, meaning the same joint on both sides of the body is affected (e.g., both knees). Fatigue and noticeable loss of energy. Low grade fevers and sometimes flu-like symptoms. Loss of appetite, weight loss, anemia associated with chronic diseases, depression. Dry eyes and dry mouth associated with a secondary condition Sjogren's syndrome.

Maybe none of this makes sense to you, and maybe your'e wife does not have it, still I would not ignore pain. I would consult a rheumatologist (a medical doctor who specializes in diagnosing and treating rheumatoid arthritis patients as well as those with other rheumatic diseases).

You see she may not have rheumatoid arthritis, but she may some kind of rheumatic diseases. It could be she is going through menopause, or well into it, and what she might have is a combination of one thing that is wrong, the headaches could be because of her pain, or could be from high blood pressure, same with her thyroid.

If she is in her menopause, had she ever think that maybe a little hormone, could help her with all of these symptomps.

Don't every ignore, someone who is sick, the longer is takes to find what the problems are, the longer it will take to treat her.

Good luck to you, and I do hope you write back to us, with more information.

I would talk to the doctor and ask for assistance to send her to a rheumy and any other specialist to help her.

•When you consult your rheumatologist, always discuss symptoms that have improved or worsened, as well as any new symptoms.

•Don't ignore pain that persists.


axxie - October 6

Hi again, sorry, I didn't want to cut my answer, but I did find also that she might have Rheumatic Diseases. These are diseases characterized by inflammation (signs include redness or heat, swelling, and symptoms such as pain) and loss of function of one or more connecting or supporting structures of the body. These diseases especially affect joints, tendons, ligaments, bones, and muscles. Common signs and symptoms are pain, swelling, and stiffness. Some rheumatic diseases also can involve internal organs.

There are more than 100 rheumatic diseases. Some are described as connective tissue diseases because they affect the supporting framework of the body and its internal organs. Others are known as autoimmune diseases because they occur when the immune system, which normally protects the body from infection and disease, harms the body’s own healthy tissues.

The reason that I also put this bit of information, is I remembered, someone who describe similar illness.

I would look at getting a referal to a rheumy doctor.


axxie - October 6

Me, again, sorry, I just could not stop....
The doctor will review the patient’s medical history, conduct a physical examination, and obtain laboratory tests and x rays or other imaging tests. The doctor may need to see the patient more than once and possibly a number of times to make an accurate diagnosis.

Medical History
It is vital for people with joint pain to give the doctor a complete medical history. Answers to the following questions will help the doctor make an accurate diagnosis:

•Is the pain in one or more joints?
•When does the pain occur?
•How long does the pain last?
•When did you first notice the pain?
•What were you doing when you first noticed the pain?
•Does activity make the pain better or worse?
•Have you had any illnesses or accidents that may account for the pain?
•Are you experiencing any other symptoms besides pain?
•Is there a family history of arthritis or other rheu­matic disease?
•What medicine(s) are you taking?
•Have you had any recent infections?
Because rheumatic diseases are so diverse and sometimes involve several parts of the body, the doctor may ask many other questions.

It may be helpful for people to keep a daily journal that describes the pain. Patients should write down what the affected joint looks like, how it feels, how long the pain lasts, and what they were doing when the pain started.

All helpfull hints, better to read on it, and make a sound decision.


Stacey373 - October 7

Hi - I'm a little confused. the other day I was looking up fibro stuff and I read that one of the symptoms IS joint pain. I can't remember what site I was on....but I do remember reading that part that talked about joint pain.

So are you guys sure joint pain isn't fibro too???

Thanks, Stacey :o)


Fantod - October 7

Stacey - Joint pain with FMS is caused by an underlying condition like arthitis, bursistis or tendonitis. FMS affects the muscles, tendons and nerves not joints. I know this gets completely confusing after a while. And, because most of us have multiple medical issues it becomes even more difficult to sort out symptoms from another. Take care.


HerRoyalHighness - October 7

I swear I feel joint pain, too, but you have to remember that the muscles, ligaments and tendons affected by FM attach to bone and joints, so yes, you can feel pain in the joint area without actually having "joint" pain (or physical maladies of the skeletal joint).



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