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Recently Diagnosed and Feeling Hopeless
4 Replies
feelinghopeless - March 25

I have been recently diagnosed with FM. I have been doing to doctors for 2 years and was pretty much told I was crazy. I finally have someone who believes me but I don't know what to do from here.

I have worked sporadically for the past 2 years which of course has caused issues with my financial and employment status. I am not married and thankfully, do not have kids. I just hurt so badly that I don't feel I can work at this time, but also do not have any form of finances if I am not working. Most people I have spoken with are married and therefore they have supplemental income.

Are most people able to function and work with FM? I need all the help and support I can get. HELP ME PLEASE!!!


Noca - March 25

Do you reside in the USA or Canada or elsewhere?


Fantod - March 25

Hello and welcome to the group. As a newly diagnosed person, it is not uncommon to feel totally lost and confused. Being diagnosed with a chronic illness is upsetting to say the least.
Particularly when it took you so long to find a doctor who would listen. I'm sorry that you had to endure all of that drama.

First of all let me say that you have not had medical help long enough to feel better. I assume you are seeing a rheumotologist who is knowledgable about Fibromyalgia (FMS). I am also going to assume that you have been started on a drug regimen to treat your symptoms. On an average, it takes a couple of months and sometimes more to find the right combination of prescribed medication and doseage to decrease your symptoms. Everyone has a different experience with FMS so there is no "tried and true" formula for treating it.

I am going to give you a crash course on FMS which should answer some of your questions. FMS is recognised by the Center for Disease Control and the National Arthitis Foundation. It is a disorder of the central nervous system which causes widespread pain. The mechanism that causes it is not understood and there is no cure. It can be managed with prescribed medication. OTC remedies do not work for the pain caused by FMS. You would be wasting your money and probably destroying your stomach and liver by trying to treat it with Tylenol or Aleve.

One of the reasons that you are so sore is due to the lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Amitriptyline is commonly prescribed as a sleep aid for people with FMS. Restorative sleep is a crucial part of treating FMS symptoms.

There are now three primary medications used to treat FMS. Lyrica is advertised on TV all of the time. Not an option as far as I am concerned. The most common side effect that is reported is rapid weight gain. Cymabalta is an antidepressant that addresses both FMS pain and the depression that usually accompanies it. I use Cymbalata and have had pretty good results. I'm extremely sensitive to medication and must take a lower dose than my doctor would like. The newest drug is Savella which was approved by the FDA last year. It has been used in Europe for quite some time and some people are reporting very good results. Your doctor should have started you on one of these three options. And, it will take several weeks for them to become established in your system.

With regard to working, that's a tough question. Personally, I am completely disabled from FMS and on SSD. Some people work part time and some full time out of necessity. Again, everyone is different and has to figure out what is best for their individual situation. I could not even work part time as I have several underlying conditions which would make me the world's most unreliable employee. I miss working and would love to be a more productive person.

I would like to gently suggest that you consider finding a therapist who specializes in people with chronic illness. You can call your local hospital physician referral service and ask them for a recommendation. I see someone myself and they have been very helpful in making me more self sufficient when it comes to managing my situation. Extra support is really important when managing a chronic illness. It really helps to be able to vent in a neutral setting and have someone "get" what I am saying rather than just making the appropriate noises.

The conclusion I came to sometime ago is that you must focus on the things that you can do as opposed to the things you can no longer manage. It doesn't matter how piddling the accomplishment might be - be grateful for it. My daily mission is to get myself up out of bed, shower and dress no matter how lousy I feel even if it takes me until dark thirty to get there. Anything that happens past that point in gravy. I have learned to think outside the box, say "no" and mean it without feeling guilty and generally make lemonade with the lemons that sometimes rain down all around me.

You are not alone. We are all here to help, Take care and God Bless.


feelinghopeless - March 25

Fantod, thank you for your response. I have not been started on any treatments yet because I am fighting my insurance company. I chose to go to an out of network facility so that I could get the best care and now I am trying to get treatment approved. That has added a lot of stress to my life, but at least I feel that I am finally seeing doctors who know what they are talking about. Once I go back to my hometown, I hope to be able to implement other things to help...swimming, therapist, etc. I appreciate your insight and will be looking for help quite often!


feelinghopeless - March 25

Noca-I am a resident of the US. I live in the south, but have seeked treatment at the Mayo Clinic in Minnesota.



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