What the h*ll is happening to me?!

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What the h*ll is happening to me?!

Postby Theresa34 » Fri Aug 01, 2014 11:53 am

I thought I was getting better but now I feel like I'm going downhill and I don't have any brakes to stop. I was put on Amitriptyline and vitamin D tablets in Feb this year on the day of my diagnosis via my rheumy. It took maybe a month before I started feeling a bit better. Previous to the meds I felt like I had constant flu, body aches, heavy feeling like concrete in my bones. And just tired! I worked my way up to doing some cardio on the Wii and Pilates at home around May I think. Then I heard my dad got cancer again (terminal this time) and suddenly the fatigue hot me hard. Then weeks later the pain came back. I always had the sciatic pain and various pains anyway, but its more now. I'm not too worried about my dad at the moment as his positivity is helping me feel ok about his diagnosis. He still looks well despite weightloss, so I'm not constantly worrying about that anymore.

The past few weeks I'm struggling to sleep again. Its like my insomnia I had months ago has restarted. Then this week it's gotten worse and I wondered whether my dose needed to go up. I thought I would wait it out but this morning was the last straw. I'm feeling so down. I feel like I'm wading through water and the concrete in my bones has returned. I struggle to walk and I'm so tired, I've had to leave a message for my nurse for help. I'm on 20mg of Amitriptyline so I know its a pretty low dose. I hope that if its upped then I can start feeling almost normal again. Sigh. Hate feeling like crap.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: What the h*ll is happening to me?!

Postby Theresa34 » Fri Aug 01, 2014 12:20 pm

Heard back from nurse. She says the bloods I had done a few weeks ago showed anemia and low white blood cell count and only slightly raised inflammation. I told her how bad Ive felt since then. She's worried. She said she doesnt think the meds I am on is doing this and I need to see a dr. If I get worse over the weekend I need to go to a & e :(
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: What the h*ll is happening to me?!

Postby Helhit » Fri Aug 01, 2014 3:09 pm

If you have other probs like anaemia, it's no wonder you feel so rotten. Hopefully though it's something that can be treated. :fingerscrossed:

Blooming fibro just will never just bog off will it!!!

I
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: What the h*ll is happening to me?!

Postby Theresa34 » Fri Aug 01, 2014 3:24 pm

The dr wants me to get bloods done at hospital ASAP and start on naproxen.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: What the h*ll is happening to me?!

Postby Helhit » Fri Aug 01, 2014 3:51 pm

I hope this sorts it for you and that you get some pain relief
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: What the h*ll is happening to me?!

Postby LibbyWick » Fri Aug 01, 2014 4:16 pm

Bless You. Unfortunately, the stress of hearing your Dad's news has probably triggered a Fibro Flare. You are on a very low dose of amitriptyline. I take 50mg an hour before bed time, then 10mg at breakfast, lunch and dinner. Which does help. I've found that naproxen did absolutely nothing for me. For me duloxetine (cymbalta) also helps and currently I'm taking 60 mg of dihydrocodeine 4 times a day too. Pleased to see your GP is investigating further and not simply blaming the FM. A good diet is so important for over all health and hopefully you'll be able to reverse your anaemia by upping your iron rich food intake. Naproxen is an anti-inflammitory but there really isn't much inflammation with FM (which is why is didn't do anything for me I guess). It might sound strange but I have found meditation helpful. It eases the stress and strains which, in turn, can help ease the flare. If you haven't meditated before I'd suggest having a look on-line to find a 'guided meditation'. Or a meditation group near you. Good luck to you. I hope you feel a bit better soon and hope some of the above is useful to you. :hugs:
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Re: What the h*ll is happening to me?!

Postby Theresa34 » Fri Aug 01, 2014 5:56 pm

Libby I have meditated in the past :-) I've just rang pharmacy regarding tablets and they don't have the prescription and now the dr is shut. Lovely! I don't know why he wants me on an anti inflammatory. I cant see how thats going to help my bloods! Will have to see how the next lot of bloods look like and take it from there :(
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
Theresa34
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Re: What the h*ll is happening to me?!

Postby zappa20 » Fri Aug 01, 2014 11:42 pm

Depending on the level of anemia and type , this could play havoc with how you're feeling. Especially if your ferritin level is low. It could be one of the medications you're taking for inflammation which could be behind the anemia ? Doctors tend not to worry too much about lowered levels until they get to aroundd 8 or less, but it can really make you feel like death even around 9. And if it's iron deficiency anemia it can also cause insomnia, poor sleep quality with frequent weakening up, headaches, heavy legs and arms irritability and and even more forgetfulness than normal.

Insist they get this sorted out for you , as it will be difficult to know what symptom is coming from Fibro and which is from anemia in the meantime.
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Re: What the h*ll is happening to me?!

Postby Tel1 » Sat Aug 16, 2014 9:15 pm

Hi Theresa

Unfortunately honey... you are not alone with what you describe.... I have had all those kind of things for years, you just keeping saying to yourself, this is it.. I am on my way out, and then without notice it kind of goes away for a little while...and then returns but with added symptoms... :yikes: what you COULD do:)) is go to an A&E or out of hours GP and just explain that you feel like you are loosing it and that the pains etc are too much along with the tiredness etc... I did all that, and was blood tested to death, and they found nothing
thank GOD.... but all the same once your mind kind of knows that, you do actually FEEL better so to speak... rest assure I have been in your situation god knows how many times, and I have felt like there was no point going on... but where there is life there is hope.

Also you could move GPs I did that 5 times... and now I am with someone who fully understands and stands by me... a lot of GPs don't even recognise Fibro....but don't despair, you WILL overcome what you are going through now, I think most of us on here have been in your current situation of a crisis ....and that makes Fibro worse.... chin up and keep going.
Last edited by FluppyPuffy on Sun Aug 17, 2014 12:56 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: What the h*ll is happening to me?!

Postby Theresa34 » Sun Aug 17, 2014 10:15 am

Thanks hun x I avoid a&be like the plague. I've been there several times for myself, hubby and my daughter. The waiting times are stupid. Anyway. Slowly feeling better. My second blood results came back and my underactive thyroid is a little worse so upping my dosage. This could be contributing to my fatigue and aches. So will see how it goes :-D
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
Theresa34
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Joined: Fri Feb 21, 2014 10:44 pm

Re: What the h*ll is happening to me?!

Postby rich44 » Sun Aug 17, 2014 11:00 am

I'd use a walk in centre over A&E if possible but they can be awful too and they often seem to err on the side of caution and say see your own gp, unless you're at deaths door.

Can I ask what dose of vit d do they have you on? I was prescribed it as levels were ridiculous but gp gave me the wrong dose (according to different gp) I was on 400 units a day, I'm now on 40,000 a day.

Hope you're feeling better soon.
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Re: What the h*ll is happening to me?!

Postby Theresa34 » Sun Aug 17, 2014 3:42 pm

For the first five weeks I was on them at a loaded dose. So etching like 20000 a week or something along those lines. It was just the one capsule. Since the five weeks I've dropped to a lower dose of 800 units a day. I recently requested a blood test to check it as well as my thyroid. Both tests I believe are back which is how I know my thyroid needs sorting out. Nothing mentioned on my vit D so must be on the right dose. I will check it further when I see rheumy in Sept. Dont know if he wants me on them forever more or come off at some point x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
Theresa34
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Joined: Fri Feb 21, 2014 10:44 pm

Re: What the h*ll is happening to me?!

Postby rich44 » Sun Aug 17, 2014 5:14 pm

At least you got the right dose which is why I thought I'd ask after my experience
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