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do i have fibromyalgia?
6 Replies
dswift1234 - September 27

Hi all I am a 25 year old male I have been suffering from chronic joint and muscle pain all over my body, muscle spasms/weakness and throbbing headaches. I have been diagnosed with IBS, Costochondritis, arthritis and psoriasis. I have a sleep disorder, chronic fatigue i find it hard to do the simplest of tasks. I suffer from depression and memory loss. This has been going on for over 6 years now and i am getting desperate. The docs have no idea whats going on and this is effecting my whole life including my wife and two kids if anyone can help me or is in the same situation please comment and let me no what you think I should do. Thank you in advance Danny.

 

deadgamegrrl - September 27

It certainly sounds to me as if you have FMS, either instead of or in addition to your other diagnoses. I'll let fantod & stacey jump in for the serious info as they are waaay more experienced with this than I am!

 

Fantod - September 27

Danny - Have you seen a rheumotologist about your symptoms? It sounds like Fibromyalgia (FMS) to me which, incidentally, is rare in men. Only 20% of men have FMS as opposed to women.

Assuming that you have seen every doctor under the sun and that they have all missed this possibility here is my suggestion. You have two options. Call your local hospital physician referral service and ask them for a recommendation to a rheumotologist with an interest in FMS. Or, you can go to the National Fibromyalgia Association website and look at the listing of fibro-friendly doctors in your area. Either way, gather up your medical records and any recent tests (blood etc) and take them with you to save time and money.

I want you to know that you are not alone and that things will get better once you get a firm diagnosis. Take some time to read through the blue boxes on the lefthand side of this page. This is the best site on the Internet for information and support for this syndrome. I hope that you will have better days ahead. Take care.

 

Fantod - September 27

Danny - I did not want to clutter up my first post with a whole lot of information. Now that you have read my first post - here is some additional information that may help.

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, 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.

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 your wife to the appointment to help you remember what was said during the visit. It will also help her to understand what you are going through and hear firsthand what the doctor has to say about your situation.

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.

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. 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.

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. My memory is pretty well intact except when I am really affected by fatigue so I only use 200 mg. You could try a higher dose. 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 want.

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.

 

dswift1234 - September 27

Thank you both for your help I will do the things you said fantod thank you so much for the detailed info it has really helped me understand better what i could be dealing with i feel much more confident now thank you both Danny.

 

Stacey373 - September 28

Hi Danny - I'm glad you found this site and forum. It sounds to me like you are probably dealing with Fibro. My heart goes out to you...being so young and also being a man dealing with this has got to be really hard and frustrating for you. I don't know what medications you are taking...so I'm going to assume you aren't taking anything and give you some suggestions.

One of the most important medications that I think we all need to take is an anti-depressant. Fibro can be physically AND mentally debilitating. Cymbalta is supposed to also help with the Fibro pain and might be a good one for you to try first. Not everyone can take that one (including me) so if it doesn't help you or you don't like it or whatever...keep trying new meds until you find something that works for you. Over the years I think I've tried them ALL and Lexapro seems to work the best for me. (but it doesn't help with pain at all...it's just an anti-depressant)

The other "normal" meds I think fibro people should be taking are sleeping pills, pain meds, and vitamins. Alot of people also take Neurotin (nerve blocker)and muscle relaxers (especially for headaches). There are alot of vitamins you could be taking...the ones I take are a prescription Vitamin D, OTC Vitamin B Complex and OTC Magnesium Oxide. (these will at least get you started and then you can research other vitamins to see if you want to add anything to this list)

Back to dealing with Doctors and Fibro....I know how frustrating it can be to see one doctor after another and they tell you that nothing is wrong with you or they blame ALL your symptoms on something else and you know darn well it's MORE than just that! My advice is to NOT GIVE UP!!! Keep going to doctors until you find one that will listen to you and will actually help you. I promise that eventually you will find one (even if most of the time it feels like you won't!)

Once you do find a doctor, you need to remember that there is NO test for Fibro. Fibro mimics alot of other diseases and illnesses, so most doctors will rule EVERY thing else out first before you ever get a Fibro diagnosis. (that's why you should bring all your medical records with you so they don't repeat any tests)

The only test for fibro is called a "Tender Point" test which is where the doctor puts slight pressure and you have pain in most of the 18 tender points on your body. You can also have a blood test done to check your Vitamin D levels...most Fibro sufferers are Vitamin D deficient.

That's all I can think of right now. I haven't been feeling very good and it's very early in the morning so my brain isn't working too well! LOL Please let us know how you are doing...Take Care, Stacey :o)

 

trixiemyrtle - September 30

how do I get them to give me my records, I have seen so many doctors and have to wait and wait for records, and then each doctor just thinks Im crazy with all thede syptoms,and still suffering in savere pain, lucky to take a shower, I am feeling so depressed.tired of crying

 

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