Newly diagnosed and feeling lost

[FarmerJoe]

Thank you Jemima:
You are very kind to share suggestions and experiences. In my local area, the only support group was shut down according to the person running it, about two months prior to my diagnosis. No other groups any where close to me as far as I can determine. Apparently not much of a need I suppose, which I guess is a very good thing. I live in a small city, but was willing to drive to area larger cities, but no luck there as well.
I know I could still use input and feedback from others to determine what has and has not worked for them. It feels rather isolating at times, and I know especially when newly diagnosed, it would have proved extremely helpful. I read an article that said the NFA maintained a database with support groups for each state, but unfortunately, I am told that is not true.
Sometimes, I think it would be very satisfying to be able to communicate with others that truly understand.
In the past, I was also referred to the Arthritis Foundation that would have support groups for Fibromyalgia, but unfortunately, that too proved wrong.
I appreciate the opportunity to chat with you and others here, this is appreciated.
Thank you.

 

[FarmerJoe]

Thank you Sunkacola. This is good to know. I look forward to learning from all of you.

 

[sunkacola]

FarmerJoe, I think many of us understand the feeling of isolation...I sure do. Honestly when I first joined this forum years ago I had no thought that it would actually help - I was only looking for answers to questions. But I have found that having the chance to learn from others and to impart information or tell my experiences is helpful to me mentally even if not physically. And any time you need to rant or need support on something, you can count on getting that here. This is a group of helpful and supportive people, because those who are not, or who try to say hurtful things, do not last for long on this forum. I hope we can be of help to you in some way.

 

[Froggyhop]

Hi Sunkacola and FM community! I am over the moon happy to have found this community of support. Grateful. Sunkacola, your post re self-empowered approach to dealing with FM is especially heartening and refreshing. I have yet to be officially diagnosed with FM, currently approaching the finish line re checking off all other possible causes of symptoms, which is a surprisingly exhausting process. Something in me has been profoundly tenacious, I KNOW something is wrong. Continually talking about my aches, pains, ailments with each new specialist has been the hardest part (complaining, weak, my judgment). I only recently entertained a FM diagnosis, but now believe this is correct. As a Clinical Massage Therapist, Craniosacral therapist, Lymphatic drainage therapist, for 25 yrs, the wisdom of your advice brings me peace and hope. My advice and experience with clients has helped me immensely in coping with my own bewildering symptoms. I too have Histamine issues, but in my case it is an Intolerance not Mast cell activated. A recent appt with an excellent Allergist has confirmed this. My diet is VERY limited but the positive results are for me, a miracle. My sleep health has vastly improved, and anxiety reduced significantly. With deep, sound sleep comes hope and a smile. I have found 200mg of L-Theanine and a Seraphos (phosphatidylserine) at bedtime to further aid sleep. I have a healthy relationship and response to my physical aches, pains, but find the exhaustion and relentless nature of my symptoms to at times feel overwhelming. Sorry this is so long, incredibly thankful to have found this group

 

[Dingle dell]

I am so sorry to hear how you feel and just to let you know I have been diagnosed today after 13 years of pain and negative test after test so feel the same. It is a shock and wonder how I am going to cope, but I have a name to what is wrong now and Im hoping this information and support we get from this forum will be of help to all of us. Tomorrow is a new day I shall have my cuppa in bed and start my plan to to live with this and enjoy the day the best I can best wishes.

 

[sunkacola]

Do not worry, dingle Bell, you can cope. All of us here are doing it and you can too.
Here you will find support and information and that will help....I always say information is power.

To get you started, here is a post I wrote of suggestions for things that you can do for yourself that may help a little or a lot but won't hurt. And many people find that when they go through the process of getting healthier over all and finding what techniques work for them to manage the pain, they do not need pain medication anywhere near as often.
Best of luck to you!

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Geeena]

Thanks for your post can I ask where you get the lidocaine from - this sounds very useful

 

[sunkacola]

As far as I know you can get lidocaine from a pharmacy but you need a prescription. It is a local anesthetic, so will relieve pain to some degree, but only for a short time and it doesn't, of course, address the underlying issues causing the pain.

 

[Ketch]

Hello and welcome, I'm new here too, but is is feeling like home. My GP never examined me either, I was referred on to a rheumatologist, a neurologist, and a psychiatrist. To me, that is the "normal" (I'm VA) route as GP's are generally NOT qualified to diagnose FM. That is the job of specialists. Dump that doctor!

 

[sunkacola]

Whatever doctor(s) have run the various tests to eliminate all the other things it could be, and views all of those results compared to what is known about fibromyalgia, is probably as qualified as any other doctor to give a diagnosis of FM. Mine came from a pain specialist.

 

[Ketch]

specialist.

Accept no substitutes, and even that should be plural, specialists. If you aren't referred to at least one from a GP, ditch the GP, they don't believe your condition.

 

[sunkacola]

Accept no substitutes, and even that should be plural, specialists. If you aren't referred to at least one from a GP, ditch the GP, they don't believe your condition.

I was talking about my own experience. And in my case, it was one pain specialist ( not plural) who believed what I was saying and helped me get referred to have all of the tests run in order to discover what was causing my experiences and symptoms. He did not diagnose me by himself, but with the help of all the results of those tests, which were all inconclusive or negative, and all of that combined with my experience and symptoms, made him ultimately come up with that diagnosis. The process took about a year and a half, but no matter how many doctors you see, there will be one of them who ultimately gives you the diagnosis.

That is how it worked for me, but I agree with you, @Ketch that only one doctor, without having submitted a person to a battery of tests and without that person having seen other doctors, cannot accurately diagnose fibromyalgia.

And a GP who refuses to refer a person presenting with pain symptoms to anyone else for testing should absolutely be ditched!