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Date: 02.10.2013
From: davina

Subject: hello marlene, advice plz x x

Hi all hope your well,
marlene how are you and family, settling to your home nicely, i hope pain has not been to bad considering the weather change.

like i said advice would be great, i have been off meds for 20 months now and in great pain,visible damage and now i have new symptoms which include pain in the neck, shoulders and what feels like shoulder blades (i'm hoping)!!! i have pain when i breath in, which is coming from the shoulder blades and its so bad i can't get out of bed by myself.
as some of you know i have been trying to conceive and now i found out i have a cyst on my left ovary and been waiting for 3 months for a scan regarding what its doing, once i have that it may need removing or can be drained, still unsure, my family think i should take a brake and get on meds for about a year then try again? knowing the nhs it will take months to sort out the cyst and in the mean time i am still struggling like crazy.

my worry is with the nhs system they will stop me seeing my gynecologist when i'm ready to start again or the medications cause more problems.
my family seam to tell me whats best in their opinion and don't seam to want to listen to my needs.

sorry long post just don't know where to turn x
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Date: 02.10.2013
From: Sean

Subject: Re: hello marlene, advice plz x x

Davina - Sorry to but in on your question for Marlene but your description of symptoms for your back, neck and shoulder blades when you breath are exactly the same as my own when I get a flare - mine also spreads to my front rib cage.
I tried a new breakfast cereal two weeks ago with buckwheat and was so sore and sticky in my shoulder blade the next day - it is often contaminated with a tiny % wheat flour.
If you are off drugs and are in the ideal position to see if any foods are affecting your arthritis - food intolerance is masked when you are on drugs.

It could also help you a lot with your other endevours - my colleague at work conceived after years of trying whilst on a low carb diet (coincidence maybe?) - but when you look at other "anecdotal" reports maybe not -

http://natural-fertility-prescription.com/case-studies/#6

The lady that started this website appears to have a high profile around the world -

http://nz.lifestyle.yahoo.com/womens-health/health/galleries/photo/-/16839903/prof-jayashri/16839924/
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Date: 03.10.2013
From: bsk

Subject: Re: hello marlene, advice plz x x

Hi Davina, sorry to hear you are feeling so rotten. Sounds as if you should see someone about the new pain. Pain in the shoulder can sometimes be referred gynaecological pain so it could be your cyst causing it. I've had an ovarian cyst which had to be drained, it was a very simple op and I do remember getting pain in my shoulders at the time. I hope it's not that but it doesn't sound like arthritis pain to me. I hope you feel better soon.
xx
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Date: 03.10.2013
From: marlene

Subject: Re: hello marlene, advice plz x x

Hi Davina, sorry to hear from you in these circumstances. Have you seen your Gp about the new pains. Oh sweetheart I don't know what to say. Your family only have your best interest at heart. I know it must be very hard for you as I know you so much want this new baby. Remember you have a gorgeous Son. You need to be well to look after him.
Davina you have to make this choice I know for you it must be a hard one.
Try to get the ovary issue sorted make some calls and see if you can get your appointment moved forward. The waiting times are so long. Keep banging on those doors until some one listens to you.
Bsk is right sometimes we get referred pain I had a cyst on my ovary and I hurt in my shoulder, odd I know. I was lucky mine strangulated its self painful at the time but saved me surgery.
Maybe Sean has something here about Diet you could try something different as you are not taking any meds.
Sweetheart keep in touch and let us know how you are getting on. Big hug on its way.

Yes I am all settled in my new home. The country life is suiting just fine in fact I wish I had done it about 10yrs ago.
Keep your chin up xxxxxxxxx
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Date: 03.10.2013
From: marlene

Subject: Re: hello marlene, advice plz x x

Davina, I was just thinking to myself I was admitted in to hospital with the self same thing pain in my shoulders and throbbing in my chest and breathing was hard and it turned out to be a pulled muscle in my chest. Just a thought!!!!!
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Date: 03.10.2013
From: Chris

Subject: Re: hello marlene, advice plz x x

Hi Davina,
i havn't any advice i'm afraid, was just moved by your post. My thoughts are with you.
Best wishes,
Chris
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Date: 03.10.2013
From: rhona

Subject: Re: hello marlene, advice plz x x

Hi Davina, Sorry to hear you are having a hard time at the moment. Have you been to the doctors about the pain in your shoulder. I get some bad pains in my shoulder with the r/a and as bsk & Marlene have said it could also be coming from the cyst, even the gall bladder can cause shoulder pain. If you are not taking any meds then it might be a good idea to try and watch your diet and see if that helps, Sean would be able to advise on the foods and supplements. I would say though if it doesn't help then you probably should take something to stop the joint damage as it is a horrible disease.

Whatever you decide I wish you good luck. x
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Date: 08.10.2013
From: davina

Subject: Re: hello marlene, advice plz x x

Hi all and thank you for your advice. I have been to my go who feels my ra is at a peek and may cause more damage so all last week I got my head around going back to meds and conception only to be told I can not take meds without the conception and with the cyst it may fuel it as its so big, what a catch 22 situation. Hate this so much the cyst just complicated the whole process. My rhumy nurse didn't like the idea of having a brake then back off meds anyway but now I'm in lots off extra pain and can't do anything about it!

Sean I have started to look into the information so thank you for it.

Hope you are all well x
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Date: 08.10.2013
From: Sean

Subject: Re: hello marlene, advice plz x x

I found this inspiring story from an amazing lady athlete (and model!) that has RA and now has deformed hands -

http://travlete.com/2013/05/08/athlete-of-the-month-angela-durazo/

https://triathleteracingwithra.wordpress.com/changing-my-life-one-meal-at-a-time/

She's lucky enough to have a full medical team to keep her going - but she's sharing her fight. This sort of thing inspires me and makes me focus even more.

I hope others can get help from this too.
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Date: 09.10.2013
From: marlene

Subject: Re: hello marlene, advice plz x x

Hi Davina, what a rotten situation you are in. I am sending you a great big hug. Sweetheart what will your next step be?
You really need to get your RA under control before you have too much damage. What are they going to do about the cyst?
I hope you get some closure soon. Keep in touch.
Chin up and take care xxxxx
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