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Is FM progressive?
12 Replies
chefbeth - October 3

hello - I am new to this forum. I registered because I want to gain more knowledge from people who are living with FM. I have not been diagnosed with FM, and plan to make an appt with my internist - who may be able to refer me to the appropriate physician: Rheum or Neurolg.. I am 46 and have noticed a slow progression of symptoms of FM over the last 6-7 years. However recently the pain has progressed much more swiftly. Mainly in the hips and knees and my BACK! I am pretty physically fit, but have backed off on workouts due to the punishing factor. I am a personal chef, so several days a week I am on my feet most of the day - also get punished at the end of the day. Symptoms that I DON'T have: headaches, pain in hands or feet, sensitive skin. Most pain seems muscular - especially on days when I didn't do anything to deserve it! Mornings are the hardest. The stiffness in my entire body makes me feel like I'm 90. Brainfog - YES - I thought maybe early dementia (ha ha). Am I crazy? I don't want to come off like a hypochondriac...but I know something is up and it's slowly getting worse.



Fantod - October 3

chefbeth - Welcome to the board. I'm going to give you a crash course on Fibromyalgia (FMS)

FFMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation, the World Health Organization and the Centers for Disease Control. Over the counter remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

FMS is not progressive like MS for example. But all of us experience different symptoms and they do vary pretty much on a daily basis. It is very diffcult to live with FMS as you can never predict how you will be feeling from one day to the next.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD, skin problems and a host of other conditions. Most of us have underlying conditions such as degenerative disc disease or arthitis as well. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation web site and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. And, a high level of anxiety is also very common. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

A rheumatologist is the doctor best suited to help you manage your symptoms and rule out other causes for your illness. Keep a log of your symptoms prior to your appointment so you can show the doctor what you experience on a day to day basis. You may want to take someone with you to the appointment to help you remember what was said during the visit. To find a fibro-friendly rheumotologist you can use the National Fibromyalgia Association website which has a list of health care professionals for each state. Or call your local hospital physician referral service.

There are now three prescribed medications to treat the pain of FMS. Lyrica is one them. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella (also known as Milnacipran) was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. Patience is key when starting a medication regimen for FMS. It can two weeks or longer before you start feeling any relief.

The longer a chronic pain cycle continues, the harder it becomes to manage or stop. It is very important to take your medication as prescribed. Some of them can not be discontinued without being weaned off of them gradually. It is very important that you discuss any problems that you may be experiencing with medication and decide with your doctor what should be done. If you are taking supplements, make sure your doctor and pharmacist have a complete list.

Also, You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist that work in tandem with one another. As I suggested, you can call your local hospital physician referral service and see if they can recommend someone.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue. Melatonin and/or Calms Forte may also help.

Memory issues or "fibro-fog" are also a common complaint. You could try a supplement called "phosphatidylserine" which comes in varying strengths. This was recommended to me by my nutritionist. You should be able to find this item at any decent healthfood store. Or, order it online from a company like Puritan's Pride which has regular sales. I use the latter for my supply - they call it "Neuro-PS." Make sure that you understand how to use it and any risks associated with taking it.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I fancy.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. If you require a sweetener, use something made from the nontoxic Stevia plant. Truvia or Sun Crystals are available right alongside the other sweetners at the grocery store. Avoid deep fried food, lunchmeat, bacon and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, you are not alone. This is a great site for support, information, to ask questions and just vent. I hope that my comments are helpful to you in some way. Take care and God Bless.


Stacey373 - October 4

Hi Chefbeth - In my experience, I have progressively gotten worse. but this varies depending on each person. So it's not a guarantee you will get worse. Although if you don't get to a doctor and get the right WILL progressively experience more pain and problems.

Everyone has pain in different areas of the body. There is no set "rules" that say you have to have pain in your hands and feet, or headaches, or sensitive skin. One symptom I don't have is the sensitive skin/Allydonia. I think the simplest way to describe Fibro pain is basically your muscles hurt and different parts of your body hurt for absolutely no reason. Like your body feels like you've done hard physical labor when you really haven't done much of anything at all.

I know how you feel about people thinking you're a hypochondriac. I've felt like that for years and didn't even tell my doctor all of my problems because I thought we could just work on one problem at a time and I didn't want her thinking I was a hypochondriac if I told her EVERY thing I was dealing with. Don't make the same mistake I did! Get a referral to a rheumatologist and tell him EVERY thing...even the "little" things that you don't think are a big deal.

Don't get too frustrated with the doctor to begin with. Fibro mimics ALOT of other diseases and most doctors will test you for everything else before they finally diagnose Fibro. there are no actual tests to find out if you have this. the only thing the doctor can do is give you the "Tender Point Test" which is where they put slight pressure and you have pain in most of the 18 tender points on your body. the only other thing they can do is test you for a Vitamin D deficiency...for some reason most Fibro sufferers are Vitamin D deficient.

You definitely need to get some sort of sleeping medication. As Fantod said, fibro disrupts the normal sleeping cycle and the longer you go without getting good sleep, the more you will be in pain. I'm experiencing this right now....I haven't slept good in weeks and I am in more pain overall than I think I've ever dealt with before. The other thing you should get is a prescription pain killer. The longer you let the pain go, the worse it will get.

Fibro not only affects you physically...but also mentally. This is a very hard illness to deal with. But by coming to this forum, it will be easier for you to handle what's going on in your head. This forum has alot of great people who are here to give advice or to just listen to you vent. And most of all...we all know exactly how you are feeling even if no one else in your life can understand.

Let us know what your doctor says. Take Care, Stacey :o)


chefbeth - October 10

Stacy - thanks so much for your comments - (I hope you will get to read this). I prepared a list of detailed symptoms (real symptoms) that I am experiencing - wow - really does sound like FM. I guess the worst part is the pain - hips and knees, feet as well. My upper back is full of knots...I used to be really fit - I still am to some extent, but it seems like I am getting weaker - I'm 46...All I do now is swim and cycle, although have started back to resistance training (light weights), because whether I have FM or not, the exercise is good - no impact stuff. When I get out of bed in the morning, or stand to walk after sitting for a little bit - I'm hunched over like an old woman. Oh well, enough for tonight - thanks so much and good luck to you...


Stacey373 - October 11

Hi chefbeth - Exercise is good as long as you don't over do it. Actually that applies to everything you do when it comes to dealing with fibro. Which is probably one of the hardest things to deal with for me. Even after I was diagnosed I fought this illness every step of the way. And now that I try not to push myself too hard, it's really hard to deal with when I STILL feel like hell for no reason!

I hope you get into to see a doctor and get this all figured out. It's very frustrating when you don't know what is going on with your body. Don't forget to let me know what your doctor says. I'm always on here checking all the posts (I almost didn't read this one...good thing I did!) Take Care, Stacey :o)


ladryna - October 11

This was a great crash course! I think I will make my husband read all this! I am so tired of being alone and miserable feeling and then getting yelled at when I do anything around the house and get more sore! Bleh... thank you all for all of your posts!


chefbeth - October 11

Now that we are talking - and I don't feel like I can share all of this with my husband (although with a diagnosis - he would be completely supportive) - here are the symptoms that I will take to my doctor. This will be the third time in about 3 years to see her about these same symptoms. Not to be redundant.....thanks for listening, Beth

To my doctor:
My symptoms: I don’t want to make something out of nothing, or coincidences – but a clear diagnosis would help me to manage the pain, etc. that I struggle with. Something just doesn’t seem right and has been this way for years. Lifestyle changes….I don’t want to spend another year trying to figure this out.

Fatigue – a regular work day on my feet leaves me completely exhausted – and in pain - very sore –doing things like housework and light yard work means an evening of stiffness and pain and fatigue…to the point that I may not be able to sleep – the pain gets better, but never completely goes away

Morning stiffness – very difficult to get out of bed and walk – feet very tender, hips stiff, lower back stiff, overall achiness – General stiffness – especially after sitting for a period of time and after working out

General pain that changes – mostly in both hips, more on left side, knees, neck (periodically) back – back can sometimes be so much (burning, deep ache) that I need a heating pad – pain meds don’t help much

Brain Fog – one of the most concerning – my short-term memory is terrible and I have an inability to concentrate and stay on task – kind of like ADD, but foggy - family teases me about it, but It's not funny to me.

Insomnia – not every night - but most nights, alot of thinking and worrying…keeps me awake – sometimes I need a nap.

Exercise routine has changed - I used to be able to do step aerobics, conditioning classes and kickboxing - but they leave me exhausted and sore for the entire day – exercise that works for me now are the cycle and pool, but I feel like I am getting weaker, not stronger.

****Stomach Issues (my husband tells me that my stomach hasn't been right since he met me three years ago) - - esophageal spasms, bloating, gas, constipation – gastroenteroligist says reflux disease with esophageal spasms

How fun....


axxie - October 11

Hello Chefbeth

Is Fibromyalgia Progressive?
Is fibromyalgia a progressive disorder, meaning does it get worse over time?
Fibromyalgia is not generally considered a progressive disorder, but in some cases it does progress. In most people, fibromyalgia symptoms go through flares (when symptoms are severe) and remissions (when symptoms are minimal or absent). Some people find ways to dramatically reduce their symptoms and enter long-term remissions. Others, however, experience an overall worsening of symptoms over time, and these cases could be considered progressive. The reason they say it's progressive, is your body cannot respond therefore you feel the pain. As for the pain in your hips and knees, is partly due to a continuation of the pain, ie, pain all over your body. Actually if you got x-ray of your hips, they would find nothing wrong. But you feel the pain, except maybe when it's real hot outside, you feel less of the problems from fibro. Hence a hot or moderately hot place to live would be ideal. Then you would feel less pain, therefore you would tend to think you were in remission. Come the cold climate and you start to feel like a 90 year old with a broken body. Fibromyalgia is not progressively it's your body that cannot produce the neros.


Nimu - October 14

Hey Famtod! It has been awhile since I have been to this forum but I am so glad that I did today. You have indeed given us very comprehensive update both on description of some of our symptoms and references.

Chefbeth, I do hope that you are able to cope and manage this very difficult condition.

All the best everyone!


lh2olady - October 14

Hi chefbeth,
I am new to this forum site also. I have not been diagnosed with FM either, but for years have felt it is a possibility. I am post menopausal and my symptoms of pain in my joints, knees, hips back, headaches, facial pain, neck and shoulder pain and IBS and depression has gotten worse. I notice if I have been stressed out for over a period of time all of sudden my symptoms come on and do no not go away. That is when I will have to take off from work because I feel worn down and almost like I have flu like symptoms. Very frustrating and adds to depression. So, I can totally relate and am hoping to find a Dr. in the northern NJ area to go to so I can have some peace of mind. Does anyone know of any Dr.s who specialize in fibro that accept insurance plans???


chefbeth - October 14

Hellop from chef beth - I feel silly saying that now - I'm a personal chef, but all of my friends just call me Beth...anyway I saw my GP today. I have been seeing her for years, so glad that she is knowledgeable of prior visits with various symptoms. She believes that I have FM, based on current and prior visits. She is treating me currently with Lyrica pending a trip to a Rhuematologist that she highly recommends for his 'bedside manner' and holistic approach. She explained that FM is a diagnosis of elimination, so she wants to get a variety of blood work done in addition to my annual thyroid and iron checks. I feel so relieved to have been able to talk with my doctor and know that she would listen and understand. Where to go from here? I have already changed my diet - eliminating most sugar, all animal products, high fat or junk foods, gluten and alcohol. Thanks for the support and I will be talking soon!


Fantod - October 14

Beth - I am relieved that you finally got a definitive diagnosis! Your doctor is correct in doing bloodwork to eliminate possible other causes for your symptoms. There are other conditions that mimic Fibromyalgia (FMS) such as thyroid problems.

I am interested in the fact that the rhuemotologist you will be seeing prefers a holistic approach. One thing that you might try for pain is the spice Curamin. I buy it in a highly purified capsule form made by Terry Naturally. I am extremely sensitive to medication so all of my prescriptions are very low doses. I add Curamin twice a day to deal with breakthrough pain which I generally have to one degree or another.

Watch for any side effects from Lyrica. The most common complaint is rapid weight gain. Most doctors are not proactive about putting patients on something else when this problem becomes apparent. I use Cymbalata which addresses both the pain and depression that usually accompanies this diagnosis. The newest drug is Savella ( called " Milnacipran" in Europe. A lot of people have had favorable results with it.

Memory issues or "fibro-fog" are also a common complaint. You could try a supplement called "phosphatidylserine" which comes in varying strengths. This was recommended to me by my nutritionist. You should be able to find this item at any decent healthfood store. Or, order it online from a company like Puritan's Pride which has regular sales. I use the latter for my supply - they call it "Neuro-PS." Make sure that you understand how to use it and any risks associated with taking it.

Patience is key when starting treatment for FMS. It could take two weeks or longer for you to notice any difference in your symptoms. Good luck, take care and let us know how we can help you.


Fantod - October 14

Beth - By the way, stay away from alcohol but particularly red wine. It contains nitrates that will boost your pain level. Nitrates can also be found in lunchmeat, bacon and a host of other things. Eating anything with nitrates is pretty much a recipe for a lot of discomfort. Take care.



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