Any advice?

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Any advice?

Postby smile » Wed Sep 03, 2014 4:43 pm

Hi, I hope it is ok to start a post, I have not been diagnosed with Fibromyalgia, but if you look at my previous post in 2013 there have been concerns.

Forward on from my last post I stayed away from the doctors. Also from Feb-June I trained for a marathon (something I have alwways wanted to do) was running 4 times a week, sometimes up to 40 miles a week. Everything was great until about a month before my marathon, started with struggling to run and keep my normal pace. I was running average 8min/under 8min miles.

The week I was due to run my marathon I started having bad night sweats, which lasted about 3 weeks. The marathon didnt go to plan, I was struggling from mile 3 and had to walk/jog from 13 miles. Finisged 30 mins over my estimated time. When I got back from marathon things didn't improve, I have bad neck pain, hurts all over to touch, swollen lymph node, my shoulders, collarbone, knees, hips, back, ribs, groins badly hurt. Tiredness has been very bad, eating sugary foods for energy, but have gone off my normal foods and don't really desire much. tiredness walking up stairs, feeling faint, then I had diarrhea for atleast 3 weeks. I also burn up like having a temperature. Also have tenderness under ribs on left side and lower left side. Also have come out in spots all over chest and back.

I eventually went back to the doctors, well made three phonecalls, each time to be told it maybe medication I am on, a stomach bug, one doctor I did see, told me I had tense neck muscles and to do neck exercises.They said my tiredness is caused by the tense neck and that my groins hurting are strains, they didnt feel my groin, told me to squat.

I had enough and saw another gp who felt my neck, groins, under armpits and stomach. Was given an urgent referral to a haematologist. Was seen withint a week and sent for ultrasounds, was told these looked ok. Also had more blood tests (everything done before then was normal, including no infections). I get the results next week.

I am just curious to see if these symptoms could infact be Fibromyalgia and the doctors are just missing it. The last doctor I saw was very rude to me, shouting at me for not mentioning certain things on the phone and that they had a busy morning. It was disgusting behaviour and leads me to not want to go back.

I have done almost no exercise since July, but went to the gym today and managed 20 mins of light exercise and feel ok. I feel like I have picked up a bit energy wise.

Thanks
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Re: Any advice?

Postby stripes64 » Wed Sep 03, 2014 5:09 pm

Everything you describe falls into the fibro list, here's the but everything else does need to be excluded, the running and exercise you have managed and are slowly getting back too, has me scratching my head not sure if others have been able to do that kind of exercise but I know I never could, it does take along time to get a diagnosis 10 years for me others a little less some more, push them on your blood tests you need everything iron calcium anything that could cause you to physically crash like that, obviously kidney and liver function, blimey we all start to sound like Dr's ourselves. I hope you don't have firbo don't be afraid to push for more and more tests. I suggest you make a journal of your health each day and list every pain or brain fog etc every ailment you have, then take it with you to see the GP or consultant then nothing gets left out, not much help I'm afraid but good luck xxx
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Re: Any advice?

Postby rich44 » Wed Sep 03, 2014 5:42 pm

Ask to be tested for glandular fever. It can hit you more or less exactly like that and leave you with ME/CFS exhaustion
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Re: Any advice?

Postby denys » Wed Sep 03, 2014 10:47 pm

Whatever you have (and we arent qualified to really say whether or not it might be fibro) you have managed brilliantly, doing that amount of exercise and actually completing a marathon whether or not you had to walk or jog and were over your estimated time is fantastic.

I wonder if you have pushed yourself just that little too far and ended up in a massive flare (dependant on whether or not its fibro) but the other posters are right everything needs to be excluded first.

It is always alright to start a post, much better than tagging onto someone elses to ask a question as it makes things easier to spot :-D :-D :-D :-D

I too hope you dont have fibro but have something treatable but whatever it is I hope you get some answers soon :hugs: :hugs: :hugs:
Denys

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Re: Any advice?

Postby smile » Thu Sep 04, 2014 2:27 pm

Thanks for the replies, I know no one can diagnose sorry if that was the impression I gave. Was just wondering if my symptoms sounded familiar.

I have had blood test for Glandular Fever, full blood count, thyroid, diabetes, mono, liver and many more.

I will just wait until I have my appointment to see where they are heading next.
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Re: Any advice?

Postby smile » Wed Sep 10, 2014 2:59 pm

Just an update really on the situation, I was seen by a haematologist regarding the lymph nodes and had further blood tests. I have been told everything is normal on their side of things and discharged. The only thing that showed up on my blood tests were raised IgA, IgG and Globulin levels, my iron levels are normal, but on the low side. So I was discharged with no further clue as to what is going on.

A family member offered to help pay for a private assessment, so called my Gp Surgery for a private referral letter and was refused, was told it could be mood related as she noticed I was on anti-depressants.

In the end I saw a private GP who I had seen once before and explained all my symptoms. He feels it isn't mood related, nor is it medication I am on, but he has given me a referral letter to see a Rheumatologist. Which I have an appointment for tomorrow. he feels this is the avenue that may give an answer. Also on my first blood test there was mention of large grandular lymphocytes and toxic 'something' neutrophills. Which the private GP says fits in with his thinking it is inflammation based.

Still feeling unwell, no exercise as of yet. So hopefully tomorrow will shed some light.
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Re: Any advice?

Postby denys » Wed Sep 10, 2014 11:24 pm

Good luck for tomorrow, hope you get the answers to help you get better
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Re: Any advice?

Postby smile » Tue Sep 16, 2014 2:01 pm

Thanks Denys,

I feel I a maybe closer to finding out the cause of all my symptoms. I saw the reumatologist last week, had an examination and went through a chat about my history.

I was sent for some more blood tests to rule out connective tissue disorder, lupus etc. The day after the appointment I got a letter through the post of the report of my first appoitment with the haematologist and it mentioned that my LHD was on the high side so needed a repeat blood test, which didn't happen and was just discharged.

I have also just got the report from the rheumatologist appointment saying that they feel my symptoms are likely to be due to Fibromyalgia, but will get the results at my appointment this week.

So hopefully I will have a better idea.
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