Hi! is there anyone else out there that is a runner with Fibromyalgia? I'm on the verge of being diagonosed with Fibromyalgia. My doctor is 98% sure that's what it is but wants me to see a Reumtologist. I've been running for 2 years, my pace isn't the fastest but it makes me feel better. In the last 2 years I've run in 8 5k's. To me, each race is a small victory in the battle against my pain and fatigue. Staying focused on my health needs is very important. I run the 5K's with 2 friends from work. They understand my limitations and are supportive. I need all the support I can get. It's a hard condition to keep moving with. Anyone have any advice, thoughts or opinions?
Hi there! First of all, I am sorry to hear that you may be diagnosed with Fibromyalgia. It's tough because it is a condition whose symptoms are often only seen by the one who has it and it can be difficult for others to understand your pain, fatigue and cloudiness. My mother suffers from fibromyalgia. I don't know if even showing her this blog would convince her of trying to walk a bit more. To be honest I think you should be extremely proud of yourself for continuing to persevere and running on a regular basis. That's just fantastic! Since I do not personally have Fibromyalgia, I can't tell you much other than what doctors have always told my mom, You need to excercise in order to gain control over fibromyalgia and there will bad days (sometime several in a row) that you can't excercise, but as soon as you do, your body will thank you for it. Apparently, your body responds well to the excercise it just takes some convincing. There is also a TON of research out there about Fibromyalgia (I think my mom has read at least half of it, lol). I also know of some sort of drug they are now prescribing for it, but my mother has been leery of trying it because she it is so new and they are uncertain of the long term effects. I apologize if this into more of a rant than anything informational. Just know there are others with fibromyalgia that don't even think they can walk a mile. You, however, are inspirational!!! Keep it up and roll with the bad days and just ask your friends to be patient with you. You are a rock-star!!!
Thank you so much for your response! Exercise is very important in controlling the pain and the fatigue of my fibro, but it is very hard to get started and maintain it. I first started walking about 1/4 mile in 2001. That short distance initially made me hurt, but I also felt a little better. I know that doesn't make any sense. Staying stagnant builds up lactate in the muscles and once you get moving that lactate starts dissolving causing some pain. At least that was how it was explained to me. Feeling a little better after a short walk, I very slowly upped how far I walked and then one day I wanted to run. The first time I ran that 1/4 mile I thought I was going to cry from excitement. My daughters remember that day. On my good days I can run up to 4 miles. My bad days I run 1 1/2 to 2 miles or not at all. I also go hiking. No major climbs, just a good hike. I find keeping moving on my good days and some of my not so good days helps. On my bad days I rest. Getting a good night's sleep and meditating (just focusing on breathing) helps me too. Like your Mom I don't take any prescriptions meds and don't want to. I take Ibophrofen and Immodium AD as needed. Having supportive people like yourself around is a huge huge help. Good luck with your mom and I'll keep her in my prayers that she finds relief too. You are an angel for being a support system for your mom. Keep up the great work! and again thank you! oh, I'm a 43 year old woman. Other than the fibro I'm also allergic to sulfites (sulfa drugs and shellfish), I found from research that an allergy to sulfites also cause pain and fatigue. I eat as much organic food as I can. Sulfites are found in all processed foods. That has also helped me a lot. My daughters could see the difference when I switched to organic food. It's not a cure but it does help a lot. Thank you and take care,....
I agree with the_great_aya that it is very impressive that you persevere and keep running.
I really don't know anything about the condition, despite having 2 friends who have suffered from it for years. For one thing, I think that there is still not a very strong consensus in the medical community on anything to do with it, so I hear very different things from these two friends about what their doctors have told them. Neither of them runs, though one of them does exercise regularly (the other is in her eighties). I know that she isn't always able to stay on her exercise schedule, but that it is very helpful when she can exercise. She also benefits from good program of physical therapy with targeted exercises and massage/manipulation.
If your body tells you the exercise is good for you, keep it up!! You are very fortunate to have the support of friends/colleagues in your running and in your life.
All best wishes!
Thank you for your support too! I am very fortunate to have friends that run with me and understand my limitations.....
It's great that you are there for you friends. They need people who may not understand the condition but will support them through it. There is a lot doctors don't know about fibro but they have learned alot. There are some great websites with information and support. I like Fibrocenter.com. As more and more people are diagnosed more informatin is becoming available. Unfortunately it is a vague condition that represents itself in different ways making it difficult to diagnose and understand. Having a support system of caring and understanding people like yourself is very important for people with this condition.
Keep up the awesome work of being a support to your friends!
I am a 50 year old woman who was diagnosed with fibryomyalgia almost 15 years ago. At that time, there wasn't much information or support - the big push was to have it recognized as a diagnosis. I was fit - I cross country skiied and rode my bike competitively - and this chronic pain and fatigue was devastating. My children were young - 2 and 5 - and I was working full time. The thought of living with such limitations was overwhelming. The treatment consisted of a nightly dose of amitriptyline and ...that was it! The amitriptyline did help. My sleep was more restorative, but I felt like a zombie. Step by step, I gradually got back into a regular exercise regime. My thought was that if I was going to ache and be fatigued, at least I could say I earned it by getting out and moving! The exercise also had a positive effect on my sleep. I cut out any alcohol, caffiene and "junk foods"...really focused on eating nutritious foods. I did some research on the internet and discovered that the "new" anti-depressant, Zoloft, was being prescribed for fibromyalgia and asked to switch. That eliminated the zombie effect.
I am very happy to say, that adding the Zoloft and being diligent about my diet, my rest, and my exercise paid off and continues to be an effective treatment. At the age of 45, I successfully completed the Madison Ironman...I race my mountain bike competitively. I am currently training (ha!) for a half-maration trail run in October (Running is not my thing...I just really want to do this event!) If I slack off on exercise, I pay the price...If I stay up too late too often, I pay the price...If I think I don't need the Zoloft...I pay the price! If I get lax with my diet...I pay the price! Full blown flare ups are few and far between. I can usually tell when one is coming and I try to determine what I can do to head it off.
It is very possible to have a highly active and energetic life with fibromyalgia. The fatigue is hard to shake...I find that having some inspirational quotes/photos help to keep me moving and grooving (the Asics ads were great when I was training for the IM). I really have to work at keeping my fitness a priority. That means that I do ride the couch more..Fortunately, my husband and kids understand and are very supportive.
I hope this is helpful...My heart goes out to you as you search to find the balance that will allow you to keep active and to experience a quality lifestyle.
Wow!!! That is awesome! You are my inspiration! That information does help. Thank you!
Everything you said is so very true. I have to always keep my health as a number one priority. I've been a single mom since 1993. My daughters are now 20 and 22. They are very supportive of me but tend to forget sometimes that mom can't do it all. The fatigue is one of the hardest things about the fibro, and sleep doesn't make it go away. It's hard to get a quality night's sleep, but it's so important to do.
The inspirational quotes/photos definitely help. One of my favorites started out as a joke from my daughters and is now a constant reminder that I need to keep moving. They got me a "No Parking" sign for the back yard. Someone wanted to park cars in my back yard and I said no. Now that sign hangs over my bed to remind me that the bed is a no parking area...get up and get moving!
Thank you for sharing your story with me. You are a very strong and motivated woman! God bless you for all you do!
Hi, I'm Tina and I was diagnosed with Fibro 1 1/2 years ago. I am only 33 years old and have arthritis too (thanks to a lifetime of gymnastics and it being hereditary). This is my second marathon on a relay team. I absolutely love running, even though it takes 3-4 days for me to recover from training and the actually marathon.
I keep very active. I have to or I'll be crippled. I do yoga, have a jacuzzi that helps with pain and try to keep as athletic as possible. I also get deep tissue massages, they hurt but feel so good.
I wish you all the best and my only advice is listen to your body. There are signs it gives us when we are about to have a flare up. Just be 'in tune' to those slight signs and you'll keep well
With great respect-Tina
Thank you for sharing your story! You are another inspiration to me!
I was wondering if Jacuzzis helped. Thank you, that's something I will definitely look into. The deep tissue massages do tend to hurt more than a regular massage but they do also feel so good. You are very right! Listening to the body is extremely important and helpful.
Keep up the awesome work and take care!
Hi! I run marathons with a diagnosis of Fibromyaglia. I was unusal as I was diagnosed at 15 yrs, I am not 32. The key to training is getting over the inital 3 miles for me - those are slower and more painful. And make sure you are paying attention to your diet. Stretching before and after any workout is a must. The other thing to be aware of is what your 'normal fibro' aches are vs a potential injury. Good Luck! And never let it get tin the way of accomplishing your goals
I am a triathlete coping with fibromyalgia. I was entering my second season of competition when I was diagnosed, and it was tough; the rheumatologist I was sent to for confirmation of my diagnosis said based on my case my triathlon career was over and that I was lucky to be getting around--his exact words. I found a new doctor and did an Olympic distance race that summer. I still think about that guy when I need motivation.
I have been able to continue, although it isn't easy. The biggest challenge is stringing together consistent blocks of training; this will probably be a little less difficult with just running to focus on. It is hard to get in all the workouts I need in three sports because it takes longer to recover than it used to, plus there are times when I can't train with the intensity/duration I really need. Also, I am still not as fast as I was my rookie season when I hardly knew what I was doing; that's pretty discouraging since if anything I'm working harder. On the plus side
and this is the most important thingI am still getting to do what I love. I know when
Do you swim? I have found swimming provides great pain relief for me. It seems to take the tension and ache from my muscles. I know you are a runner but if you like to swim it could be a great post run recovery tool. Also, massage is supposed to be a very good therapy for fibromyalgia. Lots of patiens get weekly massages and my doctor encourages me to do it but I usually find something else I need and or want to do with the money and time. Swimming seems to give me sort of the same effect.
I am extremely fortunate to have a doctor who is willing to be aggressive and who I consider a member of my team. I don't know how severe your case of fibromyalgia is (not too bad I hope!) but mine can be incapacitating so I need a lot of help. His theory and experience (and I have found this to be true as well) is that when you find a combination of drug therapy that works, eventually it becomes less effective, and then the dosages need to be tweaked or a med might need to be added or subtracted. It is an ongoing process to outwit this wicked disease!
Lyrica is a good drug for pain relief. Someone referred to it as new, and while it is newly approved for fibromyalgia, it was used for other purposes for a while before that, and has been around for a very long time in a slightly different form called Neurontin. Neurontin is generic, so more affordable, but Lyrica supposedly has fewer side effects, so it's a trade off there. I don't know what kind of drug coverage you have but that may play a role in your treatment as there are a lot of drugs that can help. I have lots more info there as well.
Well, I know you probably were looking for a response and not a novel, but as you can see I unfortunately have been forced to become very familiar with this subject. If you have any questions or you would like to talk with me there is a lot more I could share. It would also be interesting to hear how your training goes because I don't know anyone personally who has fibromyalgia and races. Do you mind me asking where you live?
It sounds as if you have a great attitude; that is half the battle.
Thank you so much for your response! Everyone has been so great with sharing their stories and showing me that yes I may be diagnosed with Fibromyalgia but I can continue to run and have an active life! My doctor is good but I don't feel like he's very supportive of me running, but I'm not ready to change doctors. I still like him and feel comfortable with him and he's not saying no, just not an athlete kind of doctor. Although I've never considered myself athletic
My daughter is a swimmer and is always trying to get me to go to the pool. I guess maybe I should listen to her. She says the same thing you do about swimming! I have had a couple of massages and really like them but like you I find the money needs to go elsewhere or I choice to spend it elsewhere.
I am self-employed and just picked up health insurance. That's the reason I haven't gone to the Rheumatologist yet. So far using just Ibuphrofen has worked for the pain. I have been doing research on prescription meds. My game plan is to hold off on prescriptions and use other options first and then when the other options don't work then take the meds. I find ten minutes of meditation in the afternoon helps and if I'm having a bad day I'll take a power nap. Right now I'm focusing on healthy living with exercise, diet, meditation and stress management. I believe attitude is very important, in all aspects of life.
I live in Upstate NY in the Lake George region. It's a beautiful area with lots of outdoor activities year round.
You also have an awesome attitude! Stay empowered and take care...
Thank you for your story! I never thought that I could run anything more than a 5K but with everyone being so great an sharing their stories I now feel that maybe I can at least run a faster 5K I am learning to be very aware of my fibro pain vs. injury. That's very important. I've learned the hard way to make sure I stretch before and after a run.
You are awesome! Thank you!
+_I Want to thank everyone for sharing your stories and being so very supportive!!!!!!!_ +
This winter I almost stopped running. My last 5K had been New Year's Eve. That was cold but awesomely fun. Unfortunately personal issues came up and I almost completely stopped running. One of my running friends had planned on running the Turning Point 5k, which was the first race he ever ran. I was the one that twisted his arm to run in it. He twisted mine back and really wanted me to run in it this year with him. I did and am so very glad I started running 5k's again. That was last Saturday 8/2. My time was 32:54...40 seconds slower than last year but I DID IT! So my next race is next Saturday, 8/17. I started that race last year and got a DNF. I pulled a muscle in my calf. It was stupidity on my part and I've since learned my lesson...I need to run my own race and not worry about what the people are doing around me. As long as I cross the finish line I will have beat last years time!
Good luck to everyone racing and running, with and without Fibro....
Stay Empowered and take care....