can't get diagnosed
Posted , 4 users are following.
HI there, my name is Dan,I'm not sure if I have fibro but would value your opinions on this,a bit of background first.
I'm 46, a musician,vocalist and I do fine art as a hobby,I was also a martial artist from the age of 13, at the age of 33 I was diagnosed with arthritic hips due to the martial arts all my life, was told they didn't want to replace my hips at such a young age and put me on tramadol as a pain killer, which I have been taking ever since.
about 4 years ago I was noticing that when playing my guitar my left hand and arm would tighten up when holding a chord position for any short length of time, this got worse and worse until it became a cramp and burning in my hand and forearm, so my wife googled this pain and suggested it might be fibra, I'd never heard of it at the time so did a little research and realised I was getting other symptoms which I thought nothing of because I was just dealing with them as and when, such as I was NEEDING to lay down if simply climbing the stairs and getting severe migraines for no reason, so I went to see my doctor.
I might as well have seen a witch doctor for all the help he was, He did a lot of physical movement tests with my hands and arms and asked me to squeeze some metal thing to guage my strength in my hands, i squeezed 46 with one hand and 45 with my other,he told me an average man with no problems can only squeeze around 25 to 26,so its all in my head!
a sudden squeeze is not what causes the pain its a prolonged hold that causes the agony, so I suggested that I'd researched fibra and could it be that?
I was told quote: fibramyalgia is not a recognised condition, translated it simply means aching muscles and we all get that especially now you're getting a bit older,so just keep doing what you do with your music and don't give up!
Now I know I'm not debilitated with it as some of you poor souls are but I'm also taking tramadol to ease my hip pain and I fear it could be hiding other symptoms of pain elsewhere in my body. I've had to come on here today as last night I was working on some art work using pastel pencils, small constant movements whilst colouring and shading, had a ten minute break and suddendly I had an indescribable pain in my right forearm,just above the wrist on the back of my arm, it went hot then solid and made my whole body ache and my skin seemed to bruise underneath the area, it still feels sore today and i feel lost as to what I can do to at least have this problem recognised.
does this sound anything like fibra that you guys suffer, I have migraines about three times a month and am always sick with them, and my back always aches, I've lost interest in things that i used to enjoy and my wife says she thinks I'm suffering depression, though I feel ok myself, i never want to visit family and I'm quite happy to be left alone all day everyday.
hope this wasn't too long.
thanks for listening
Dan,leicester.
0 likes, 7 replies
WeezieBull69 dan120371
Posted
Heartbreakingly familiar I'm so sorry to say.
I can trace my pain back to age 5. At 49, I've been to every kind of doctor imaginable. Finally a year ago a rheumatologist did minimal testing and gave me FMS as well as CFS/ME. My loyal neurologists over the years had avoided diagnosing me with the f word because they didn't want to subject me to moronic doctors like the one you saw. I've since given up doctoring. Getting into pain specialists is impossible in many areas including mine.
Your stomatology sounds like FMS, please get second or as many opinions as it takes until your pain is taken seriously.
dan120371 WeezieBull69
Posted
Thanks for the quick reply, i can only imagine the pain you went through and the frustration from such a young age, I didn't want to cause too much trouble if it wasn't fibro I was suffering with,which is why I came on here, when we trust our medical "professionals" it can be a bit daunting when they say its in your head.
we recently moved home and are in the process of registering with a new doctors which I'm told are great,so I'm keeping my fingers crossed( although they bloody hurt!!..... sorry,my sense of humour,can't let it all get us down!!)
Dan.
Magpie2me dan120371
Posted
Hi Dan, It is always difficult for a man to seek help so I commend you for that. Men always think they have to be so strong and just deal with it! Not true by the way! It takes a real man to admit where he is struggling and seek information. Well I was thinking that since you are a musician and an artist Dan, the pain in your arm can be due to repetitive movement which can cause carpal tunnel syndrome. I would get that checked out Dan. There is a simple surgery that can be done to open up the carpal tunnel which can be blocked or closed. Carpal tunnel can cause excrutiating pain and burning in the arm and hands. I have had carpal tunnel for decades. I myself have never had the surgery but so many I know have and it has been successful. Cudos by the way for you being such a talented and gifted person! I can imagine also that there are stressful demands and expectations on someone who performs. So another source of discomfort and pain can also come from Stress Dan. So perhaps managing your Stress, worry or any pressures you are feeling, can go a long way in helping you deal with pain. You could be suffering also from Stress headaches. Stress puts enormous pressure on the neck and shoulders, so the blood is not able to flow as freely and can cause migraines and headaches. I think when we are dealing with any on going pain Dan, the tendancy is to feel inadequate and then somewhat withdrawn with some feelings of depression. Your wife would be worried about you which is understandable. I also think it is more difficult for a man to get at the source of his thoughts and worries. Do you have a friend that you feel comfortable with and trust? Just talking about your concerns or any worries that you may have, can prove to be an immediate relief. When you put into words things that could be bothering you; things seem to take on a different perspective. But if it is too hard for you to confide in others; then perhaps doing it on your computer and typing it out in Word or another program. Or just write out your thoughts in a journal. Men are often isolated compared to women; in that they are not always open about what is bothering them. So they don't have the input from others or they never really get to the bottom of issues for fear of being viewed as weak. But it takes much more strength to seek help as you are doing right now Dan, than it does to cocoon oneself and just 'suck it up' so to speak. And if you are really concerned as to whether you have Fibromyalgia or not, the best thing to do is to ask your doctor to refer you to a Rheumatologist. They are more the experts to determine if it really is this condition or not. One way or another, I am sure you will eventually get some relief. All the best to you Dan! Maggie
dan120371 Magpie2me
Posted
Hi Maggie, thanks for your reply, first of all I DID notice most of the people on this forum are female and I was worried to ask incase I may sound foolish because I really didn't know if it was a female condition and didn't affect men.
I had carpal tunnel syndrome in both hands which I had operated on and it was succesful in that the nerves were really trapped bad,so much that the surgeon commented that he'd not seen one quite so bad( left hand), so he realeased them. The pain in my hands while playing guitar was the cause for me FIRST visiting a doctor, after these were done and I was still in pain was when I decided It had to be something else and that's when my wife googled it.
If you knew me you'd laugh at me being stressed about anything, I'm so laid back that I really don't worry about anything, so I'm glad you suggested it but I really don't have any stress,(my wife says she worries enough for both of us! lol)
Also performing on stage, is something I look forward to now as I've been on stage for 20 odd years,it's now second nature, I did get worried at first but now,I don't think even deep down I worry about performing.
I think the feelings of depression ( I don't really feel depressed,but when my wife points things out like lack of interest in anything,I think mmmm,,yeahh,maybe it could be a bit of depression) but I think that it is more of the fact that being on long term tramadol,(which is also used as an anti depressant in higher doses) for pain relief,I HAVE become reliant on them and if I miss a dose I think they're causing a dip in my feelings leading to what my wife describes as the depression.I only take them as prescribed but if I don't take any I DO become agressive and annoyed at tiny little things, so much so that even the kids say,"have you had your tramadol?!",if I tell them off for anything!!
another thing which makes me think it may be fibro is a few times I've just bumped my arms on,say, the corner of a table, in the past I'd have just cursed a little and never thought about it again, but now if I bump myself lightly it is like I have been hit with a sledge hammer and my whole arm and shoulder have to be supported until the pain subsides, I've literally doubled up holding my arm after a light knock. my lads used to say can i punch your arms to show how tough I am ( about 8 years old i might add) so I'd tense up and let them hit my upper arm and say wow you're soooo strong, last time about a year ago my now 11 year old asked the same,without thinking I let him,and JEEEZUSSS either he hits like mike tyson or I have a problem! lol
The migraines I used to think was due to late nights loud music,eating when i get home,the longs drives back in the dark were all contributing towards them but recently I've started having them randomly during the week. as I say I didn't connect them to fibra at first because of my working,sleeping patterns, but I get them so severe when I do that they drain me for about three days after the head pain has gone. I have slightly high blood pressure too and now on tablets to keep that in check due to the migraine problem.
sorry to go on, I really appreciate the fact you have replied to my problem and I certainly will have a good long think about things that might be bothering me deep down( late tax return for one!!)but like I say i probably subconciously worry about stuff like that rather than conciously worry.
I will ask to be referred to a rheumatologist, as I have suffered rheumatism in my lower legs since I was about 4 years old, if they can diagnose fibra I think it will be a help just to know its not in my head!
Kindest regards
Dan
Magpie2me dan120371
Posted
dan120371 Magpie2me
Posted
Thanks Maggie they are great!, I got 5 kids of my own and 3 step daughters and they ALL see me as their real dad, so I can't be doing too bad with them....:-)
it's my chronic fatigue that is the biggest problem in my families life, Lynn understands now a lot more, that I HAVE to lie down more than most people, she used to just think I was being lazy, but she is great now.
with the pain, I just deal with it most of the time, plus being on tramadol must be disguising a lot of it, I know if i have been late taking them I can hardly stand up with my hip pain, and if I've been sitting cross legged with the kids on the floor for any length of time, the little sods think its dead funny coz i'm like a 90 year old trying to get up!
best wishes to you and your Maggie, I'll let you know how i get on at the new doctors when we finally get time to go and register with them!
Dan
Visionary67 dan120371
Posted
Hello Dan,
Have your wife to research myofascial pain. I have that as well as fibromyalgia. Have your wife research "trigger point therapy" for your hands/arms......often times if myofascial isn't treated, it can mimic fibromyalgia but more often than not they typically go hand in hand. Some specialists believe that if myofascial pain isn't treated early enough it can lead to fibromyalgia. Trigger point therapy (I do my own at home), has been a life saver for me when it came to relieving my myofascial pain.