Fibromyalgia? Not sure?

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Fibromyalgia? Not sure?

Postby Bellarje » Fri Jan 17, 2014 6:47 am

I haven't been diagnosed with FM or indeed with anything. The process of diagnosis is so slow and frustrating.

My name is Jonathan. 45. Married, 3 kids. Self employed.

August 18th 2013. Very sore neck and arm. Started the evening after a Go Ape tree top trail with a bash into a net. Didn't go away. October 2013 - pins and needles in fingers and toes. November 2013. Aches then in neck, arms, legs and feet. Sort of cold or burning feeling. Won't go away but is eased by exercise. Keen runner.

What else. Chronic sleep, heavy sweating with even moderate exercise. Feeling cold rest of time! Depressed at times even suicidal (was standing on top of a cliff and tempted to jump).

MRI test done in December but no results back yet. Waiting on Neuro physio tests. Process is glacial.

Feeling very alone - doctor didn't even want to refer for MRI, wife thinks I'm just stressed and need to snap out of it.


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Re: Fibromyalgia? Not sure?

Postby whoami » Fri Jan 17, 2014 7:29 am

Jonathan, you are right the diagnosis for fibro can be more than frustrating. Your MRI could possibly come back negative also.

Has your Dr tested your thyroid? Does your Dr know how depressed you are and did he give you anything for depression?

It is so easy for someone to say to snap out of it. Your wife is probably trying to help in her own way but unless you have experienced fibro it is hard to understand.

A good and positive thing is that you are trying to exercise. Remember to do it in small steps. It will hurt since your body is not use to the exercise.

Jonathan, you are not alone, never alone here. There are many here that will listen, can relate but most of all will hear you when they listen. They will understand. Jonathan, we are here to give you our hand and help pull you back from those dark places.

Jonathan, on your next visit to the Dr ask him if he can refer you to a pain clinic or a rheumatologist. Ask your Dr if he feels that they can help diagnose you.

Jonathan, hang in there. Once you get a diagnosis, fibro or something else then you can start with a treatment plan.

Sending gentle hugs, Lorraine

I have been dealing with fibro for 25 years. Jonathan, there is a light at the end of the tunnel. Once you can get a treatment plan in action you can live a happy, loving, productive life. You will have times of pain and stress but it can become much more tolerable.
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Re: Fibromyalgia? Not sure?

Postby Bellarje » Fri Jan 17, 2014 9:25 am

Many many thanks for the positive reply. Exercise is great for me. I used to be super fit and run ultra marathons etc. I at least grateful that I can still run. I get about 30 mins afterwards before the pains and fog returns. I was negative of my wife's attitude. That was unfair. She has plenty of issues herself. Many caused by myself. I will persevere as you suggest. Ta.


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Re: Fibromyalgia? Not sure?

Postby FluppyPuffy » Sat Jan 18, 2014 2:05 pm

:welcome: to our FibroFamily Jonathon :cow-wave: :cow-wave:

Sorry to hear what you've been going thru, the journey to get those answers you're looking can be very long and frustrating, at least you have been able to take those first steps towards getting them. For some, it can take a number of years to even find someone who will listen and take what they are saying seriously :facepalm: :facepalm: It doesn't help that there isn't a widely~used test that will show FM up. The only one available at the moment is in the States, and is only available to those who can afford to pay for it. Here, all other possibilities need to be investigated and excluded before an FM dx is arrived at, which takes time.

Being told to snap out of it is something a lot of us have been told. In a lot of cases, it's not said out of malice, but comes from frustrations as the person saying it is just as desperate as you are to get some answers, but they feel useless, powerless because there isn't anything they can do to either speed things up for you, or make you feel better :( :( :( With how you feel tho, feeling negative to such comments is more~or~less inevitable unfortunately. The two of you talking openly and honestly to each other could help ease things a little.

Keeping yourself as active as you can is a good thing to do, altho you need to bear in mind how your capabilities will/may have have changed as your symptoms have appeared and issues have developed. Taking each day as it comes, and going with what our bodies tell us is how most of us try to manage things.

To help with the dx~ing process (altho it doesn't guarantee that things will move any quicker) some have found that compiling a list of their symptoms and problems and drawing comparisons between that and those which are attributed to FM can help with creating that overall picture of what they deal with each day. Keeping a diary can also add to that, as well as help show any particular triggers, patterns in flares etc, so if it isn't something you've already done, it may be worth considering.

As Lorraine has said, there is light at the end of things, and each step you take brings you a little nearer to its brightness. The journey will be a bit bumpy at times, and there will be blips and hic~cups along the way, but it is possible to enjoy yourself and :bear-dancing: :bear-dancing: :bear-dancing: along the way.
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Re: Fibromyalgia? Not sure?

Postby denys » Sun Jan 19, 2014 12:40 am

Hi and :welcome: to the forum :-D :-D
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Re: Fibromyalgia? Not sure?

Postby bandj » Sun Jan 19, 2014 7:55 am

Hello Jonathan,
I've recently been diagnosed and, you're right, it's a long, slow process. I read a book from the library written by a gp which really helped as so many of my symptoms were listed! So I started taking supplements and treating myself as though I had fibro long before the consultant confirmed it.try to stay relaxed and positive as stress seriously affects fibro. And if you feel suicidal again, come onon here, talk to Samaritans or a understanding friend. Even though you've not had a diagnosis yet, consider joining a group for mutual support. I feel for you and your wife as hubby and I have just been through this process. It doesn't stop when you geg diagnosed either. I've seen neurologists and OTs but not the rheumatologist! Oh, and by the way, its a relief to find another 45 yr old wiyh hot flushes!! They drive me to distraction!! I'm so glad you found this site. Hang on in there. Hugs to you and your wife. :grouphug:
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