Newbie and newly diagnosed

I have had particularly severe pain recently and have been to see a consultant privately as we've been trying to conceive for 5 years and my last round of IVF had to be cancelled due to a poor response to my medication, with so many delays and one more go on the horizon I needed to know if there was something going on.

I asked for tests to be done as I knew something wasn't right, I tested positive for an autoimmune disorder but this took months to be diagnosed and my consultant is convinced that the fibromyalgia also diagnosed at the same time is causing my pain.

He is very hesitant to give me any medication however I've just take a small dose of steroids for 2 weeks so he could see if I responded.......if anything I feel just as bad and have severe pain and slight swelling along my forehead/eyebrow line and temples in addition to the back/shoulder, scalp, knee and heavy hand and feet feeling.

He basically said there was no medication for fibromyalgia and I am still trying to conceive so I guess medication is out for me.....

I used to run but now after a few attempts I'm not sure its the right exercise for me but I really don't want to give it up, I have put on weight too over the past couple of years and exercise really helps my moods which as you know are crazy when you're living with this...

Any suggestions about how to manage my pain myself without medication would be greatly appreciated.

I'm 35 and live in South Wales, if there are any support groups out there local to this area I would happily go.......

aaararrgghh this really does hurt!

6 Replies

  • There are some supplements that you could take, as long as they won't interfere with your IVF treatment, you would need to check. A magnesium supplement can help with the pain as being deficient can actually cause some of the pain; it is generally recommended on here to take the citrate or malate version. Also I know a lot of sufferers are checked for vitamin b and d deficiencies as these levels can be low; again supplements for these can help. Gentle exercising like yoga or some people swim can be helpful.

    I am sure there will be lots of advice for you as there are so many different approaches to treatment; it is certainly not a one size fits all treatment for this condition so a lot of trial and error is involved.

    Good luck in finding the right treatment for you and all the best as you try for a family. Gentle hugs, Steph

  • Brill very helpful thank you x

  • Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information:

    I have also pasted you a link to the Fibromyalgia Action UK cache on groups, so I hope that you find this useful: ttp://

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Thank you!

  • Hi there I was in same boat, as well as fibro, I have under active thyroid and inflammatory arthritis. I had to stop all meds (except thyroid ones) to get pregnant. I found steroids work for me too but can't stay on for long as I also have osteoporosis. I used strong painkillers and short dose of steroids to get pain under control then used complementary stuff to try keep it at bay. I totally agree on trying the supplements too. I find low but D really affects my pain levels.

    Without meds these are things that worked for me and I still use them all today. I found heat was best thing for my pain relief. Wear layers and fleecy clothes to stay warm. Long hot showers and moist heat like steam rooms, great for sore and stiff muscles. Gel packs can be used hot or cold. Heat pillows and cushions that can be used in microwave like wheat grass , cherry stones etc. Electric heat pads and blankets and the old reliable hot water bottle. Heat plasters that you can wear for hours under clothes. Other things that helped me was difene and ibropfen gel for rubbing into shoulders, knees etc. Massages, yoga and tai chi. Swiming too but I have to use a hot pool as pain feels worse if waters cool. Try a floatation tank if there's one near you or use epson salts in your bath. I saw a physio and got a stretching and range of motion programme. Rest as much as possible, try to make sleep and rest a priority as you might have less pain to deal with. Relaxation and guided meditation recordings - there are some good pain and sleep ones that are available as apps to download. Never tried acupuncture but some say it helps too.

    Hope you get some relief and have good luck trying for as baby. May I suggest getting your thyroid levels checked as if its low it can affect fertility and cause pains and acges similar to fibro too ?

    Remember everyone finds different things work for them. You're best to try lots of different options to see what suits you best. Good luck x

  • Thank you so much for that, really helpful in due to go back to my doc so will ask her to check my thyroid x

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