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Questions about Fibro
7 Replies
Angelgirl - May 15

I was just recently confirmed I have Fibro, I have been fighting the symptoms about 10 years or more. My doctor thought I had arthritis or RA, but now all the symptoms are pointing in that direction. Now it seems my doctor is laid back, she has taken me off my antiflammatory meds, but no future appts to go back and be put on Cymbalta, or nothing else to help. I went ahead and found someone who treats patients with Fibro, not sure what to expect. Has anyone been apart of this type of treatment? I am so depressed, I feel like my doctor is not going to help me any further, now she has a name for my problems. Sometimes I feel like she treats me for more depression type problems instead of really having a problem with pain. My legs hurt so much at night, I turn side to side trying to get back to sleep. My heels hurt, they call it plantar fasciatis, I have been seeing someone for a year and they still can't make the pain go away. My doctor shrugs her shoulders, now try therapy. Nothing seems to work, she will not book me for surgery to get rid of the spurs, she said it doesn't work. I have seen a doctor in the fracture clinic he tried cortosone shots, still no help. I can't walk for long, my lower back hurts, goes down my legs and my heels hurt. I am gaining weight and all my Dr can say is go swimming. I work full time, how do I do this? I am so tired, sore and exhausted. What can I do? Can anyone help me with suggestions? First time trying the Support Group, I need someone to talk to for answers, my Dr doesn't have the time. Anyone out there?

 

STAYLOR875 - May 15

I went through the same thing until I found another Doctor who cared about me and believed in me. I also have Psoriatic Arthritis so he is treating me for both. He gave me pain medication, Cymbalta, trazadone to sleep (he told me it is very important to have sleep with Fibro)and also gave me prednisone. The important thing is to find a doctor that treats Fibromyalgia like a Rheumatologist and someone that will treat all sides of it, especially the pain. I still have flare ups and pain but I feel a lot better then before I went to see him. Take care and please see someone else and let us know how you are doing. You will feel better soon. Sandy

 

kentucky girl - May 15

Angelgirl, first welcome to the forum. I was diagnosed with FM in 2006 after exhaustive tests to rule out other diseases or conditions. The tests were all done by my GP and he is the one that diagnosed me. However, I asked for a referral to a rheumatologist. He concurred with the FM diagnosis and prescribed Lyrica. Long story short, the Lyrica worked for about 2 years although every 6-8 months the dosage had to be increased until it stopped working all together last summer. I went off Lyrica and had the worst flare I had ever had, lasting about 5 months. I was bedridden for most of that time. I lost faith in my rheumatologist and went back to my GP. You have to find a doctor that you are comfortable with and who is willing to work with you to find something that works. FM affects different people in different ways and what works for some may not work for you. Keep searching for that Dr. that is the right fit for you. I cannot stress this enough! My GP has tried me on Cymbalta which didn't work for me. I have recently been prescribed Savella, which I find helps some, but way short of relieving all the pain. I guess what I'm trying to say is that you will most likely spend a lot of time trying different things until you find something that gives you some relief.

I think the best medicine is that you inform yourself of the disease and the associated problems of the disease and keep experimenting. This forum gives you the experience of other FM sufferers who may be further along in their treatment and you may hear of something on the forum that may work for you.

Above all find the right fit with a Dr. whether a specialist or GP who you connect with and who is informed about FM and who is willing to try different things in your treatment, including pain medication.



Good luck, and gently hugs!!

 

Fantod - May 15

Angelgirl - Hello and welcome to the forum!
I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

FMS 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 and the Centers for Disease Control. OTC 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.

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 and a host of other conditions. 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 website 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.

There is a grieving process that goes along with learning to live with a chronic illness like FMS. 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. You can find a counselor by calling your local hospital physician referral service and asking for a counselor that specializes in treating people with chronic illness and/or pain.


A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. 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 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. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone with an interest in FMS.

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.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, 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 want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat 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.

Plantar facisitis is very common among people with FMS. It should be treated by a podiatrist with a sports medicine background. The common treatment for this is orthotics for your shoes to correct the way that you walk. Ignoring or not treating this condition properly can lead to permanent tendon damage in your feet. And, bone spurs can be removed surgically with success regardless of what your doctor told you.

If I were in your place, I would be furious that your primary care doctor is so disinterested in your health issues. They should be reported in writing to the hospital system they are affiliated with as well as your insurance company. You are going to have to become very proactive about your health care. All of us have had bad experiences with doctors. There are still a lot of doctors out there that think FMS is a figment of our collective imaginations. The simple solution to that is to keep looking until you find someone who is going to treat you in a respectful, caring manner. You need to find another primary care doctor ASAP.

And my final suggestion is the National Fibromyalgia Association website which has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. Clearly your current doctor is not addressing your needs. Be sure to take a copy of your medical record and any current tests including bloodwork with you to save time and money.

I hope that my comments have been helpful to you in some way. Take care and God Bless.

 

Angelgirl - May 15

Thank you so much everyone for your helpful information. I am going to see someone that is helpful with FMS. I will let you know how it goes. Unfortunately, I am in Canada and we have a doctor shortage, we can't find another doctor if we already have one, but I do agree I need to. I will address my doctor about the need to see another Rheumatologist. The one I have now diagnosed me and signed me off to my family doctor. She doesn't work very much now, she is close to retiring so she is cutting her work load. She left everything up to my family doctor she has made her recommendations and has signed off the case. I think my family doctor is in the same situation she has a heavy case load and just can't deal with another patient with heavy needs and attention. She likes to prescribe a pill and send you off, but in all fairness I really do like her a lot and she has been there for me when my mom died, and when my husband lost his job. However, I have to find help fast. My doctor did recommend me to take up low impact swimming aerobics, has anyone done this type of sport, and if so did it work? I am really going to have to push myself to do this, time is hard to find, but if it works I am thinking about it. Your comments would be appreciated.

Thank you everyone for your thoughtful words. Take care.

 

Fantod - May 15

Angelgirl -
Where are you in Canada? We have other Canadians on this site.

I would not sign up for a swimming program until your symptoms are better controlled. And, you should be in a water aerobics program for arthritics and not a regular class. A class for arthritics is a slower pace which is better suited to someone with FMS. You may need a referral from your doctor to sign up.

Another option would be Tai Chi. You could buy a DVD for beginners and work on it at home. You can also walk which is another easy solution.

But, no matter what you do, do it very, very slowly. Overdoing anything with FMS leads to days and potentially weeks of feeling much worse. You'll have to judge what you think you can manage but be careful. Ten minutes may not seem like much but it is a start. Better that you underestimate than overdo it and end up in bed for a week. Take care.

 

Fantod - May 15

Angelgirl- What do you mean when you ask if the exercise program worked? If you are asking will it cure your FMS symptoms - the answer is no. It may give you more stamina over the long haul if you can stick with it. Some people say that they do feel better but other people can not cope with the slightest additional activity. Exercise is supposed to benefical for people with FMS but managing to do it on top of unrelenting pain and a host of other symptoms is pretty tough. Just do the best you can.

 

ptalana - May 16

Hi Angelgirl and welcome to our fibro family:)
I can totally relate to your frustrations! What you need is a rheumatologist they are trained to treat fibro. If your doctor is unhelpful you can go to your local hospital's physician referral service and ask for a fibro friendly rheumatologist. It is imperative that you start some kind of treatment asap, the longer you wait the harder it is for treatments to take effect.
I would suggest you utilize the blue boxes on the left side of screen and read all the info provided. You will find that all the symptoms you have mentioned are linked to fibro. With fibro knowledge is power, and since fibro is so complex effecting all aspects of our body it is essential that you have a strong understanding of what you're dealing with. These blue boxes hold a wealth of info not only on fibro, but also on the associated conditions linked with fibro.
You have to be a strong advocate for your health, as there are still medical professionals who do not accept fms. As remarkable as this is it makes things that much more of a challenge for us. Unfortunately it seems that your doctor may be one of these, at the very least she is not being a proper advocate for your health. You need to take control now and find someone who will take you seriously.
Unfortunately I am unable to take the medications that are recommended for treatment due to severe reactions. I can only be treated for the severe pain, without these I would be bedridden. Since my accident I have extreme mobility issues, I use a walker at home, and a wheelchair outside of the home. I was left with nerve damage to my spine, and a forward posturing neck, developed a double lumbar scoliosis, and then fibro. I look at myself in the mirror and wonder who this person is?! I was a very active person who exercised everyday. But life is full of challenges and I'm up for this challenge!!! I do a 20 min 5 x a week pilates routine, this is highly recommended for back and spine issues. It also helps keep your blood circulation functioning properly. Swimming is also highly recommended in that it is low impact, so easier on our bodies.
I watch my diet, no nitrates (lunch meat, bacon, hotdogs etc), white flour, fried foods, pop.
I would also suggest you get your levels for vitamins D and B checked as these are commonly effected with fibro. My vitamin D levels were dangerously low and I now take a supplement daily.
I know how overwhelming this can all seem, but we are here for you. Please let us know if/when you get the proper medical care. I wish you all the best and that you find a fibro friendly doc very soon.
Sending you a gentle fibro hug, Patty

 

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