Fibromyalgia or Lyme?

Infections
1

Hey there, I was wondering if anyone has been diagnosed with Fibromyalgia, when really they have Lyme? 

I went to see my Doctor this morning for my 6 week check after having a baby. I brought up Lyme disease as I've had my doubts about my diagnosis of Fibro. She hadn't even heard of Lyme and had to look on her Doctors symptom checker! She said it's not Lyme after reading the notes. Could someone please read my little story below and tell me if you think it could be Lyme.

I went to Thailand in April 2014. I visited Bangkok and one of the islands called Koh Chang. Whilst there I got bitten by what I thought were mosquitoes, but one of these bites inparticular became very inflammed and grew to about the size of the palm of my hand. I just thought I was maybe allergic to mosquito bites (I had never heard of Lyme). These bites took about a month to go, and about 2-3 weeks of being back in the UK, I began to feel unwell. Flu-like symptoms, general tiredness, muscle aches and pains etc. I continued to deteriorate over the next coming months, being fobbed off by the practice nurse and even being told it's my diet causing my illness! I got all the bloods done which all came back negative, but was never tested for Lyme. It got to the point where I became so weak, that I couldn't even squeeze the shampoo bottle in the shower, getting out of bed took me about 10 minutes, I'd wake in the night and I wasn't even able to pull the duvet back over me. I couldn't get in the bath/sit on the floor at all or walk up/down stairs properly and when my feet had swollen so much that I could barely walk, I got referred to the Rheumatologist. He then diagnosed Fibro and then that was that. 

I then went on to get pregnant about 4 months after diagnosis, so had to come off Fibro meds and all symptoms went away whilst pregnant, and I'm still mostly symptom free now (just stiffness in mornings). I read up on Lyme symptoms and I can pretty much tick every box (before I got pregnant). My main worry is that I've passed it to my baby through pregnancy (if that's possible?). I asked the Doctor about this today and she said "you can't pass Fibro to your baby".. so I just gave up, she obviously wasn't listening anyway. Any feedback would be much appreciated :-)

 

2

Hello. You've come to the right place for advice. 

I had similar symptoms to you, but was diagnosed with a Baker's Cyst until I became almost bed ridden and a duty doctor (not my own GP) suggested Lyme Disease. I was tested (ELISA blood test), which is notoriously unreliable, but came back with positive results which meant I was given a month's supply of antibiotics (Doxycycline) which helped me recover.

I was advised and supported by Lyme Disease Action. Here is a link to their website:

http://www.lymediseaseaction.org.uk

They are a recognised source of information for Lyme Disease and will advise you on how to communicate with your GP so that they will listen.

Here's what I did that helped me, as my GP had a closed mind for a number of months:

1. Start a diary and list dates and times of when you were bitten, where, what it looked like and if it looked like a bullseye rash. Show a timeline of how your symptoms progressed and number your pain levels from 1-10, 10 being the highest.

2. Refer to Public Health England's Lyme Disease suggested referral pathway, which is a guide to all GPs. Here is the link:

http://www.lymediseaseaction.org.uk/wp-content/uploads/2014/09/Suggested-referral-pathway-symptoms-Lyme-disease.pdf

Print this off, study it and take it with you when you see your GP. Public Health England advise GPs on how to approach Lyme Disease and GPs follow their guidelines.

3. Get informed, but understand that a lot of Lyme Disease websites contain horror stories and worse case scenarios. After reading a lot of conflicting information, I stayed with Lyme Disease Action and focussed on getting the GPs onside.

4. Get your GP onside. Remember that they are not the enemy. They can't know everything and there isn't a lot known about Lyme Disease in the NHS system. 

5. Stay calm. When you communicate with your GP, make sure you have everything written down so you are referring to notes. I did this and it helped enormously, particularly as I was in such terrible pain and my head was in a foggy state. It keeps you focussed and calm. Your GP will stop listening to you if you come across as emotional or confused.

6. Make contact with Lyme Disease Action. They will come back to you within 48 hours and advise you on what to do. Put down all your concerns, including whether it's possible to pass LD onto your baby. I understand that this would be a huge concern.

7. Don't give up. If you think that you have been bitten by a tick and have contracted Lyme Disease, keep pushing for a blood test. It's not reliable, but it worked for me and once you have a positive result, you are given treatment. If your result is inconclusive or negative, that is more complicated, but you can only take one step at a time so worry about that later if it actually happens.

Good luck with it all and I hope that this has helped you.

Best wishes,

Caroline

 

3

I was told I had fibromyalgia in 2009.  I was also told my symptoms were in my head and then 2 years later finally diagnosed with hyperthyroidism.  Symptoms persisted so I sent blood to USA for testing and it came back positive for Lyme Disease.  Since 1998 I was getting bad spells of vertigo which started after a bad bout of flu (I did see a tick on the bedroom floor around that time), but the vertigo went away when I was pregnant in 2001 and came back not as frequently after I gave birth.  In 2008 I started getting allergic to medications and was given a corticosteroid shot by an allergist.  Since then I have been really ill.

Doctors in UK won't listen to anything to do with Lyme Disease, the UK tests are rubbish but they wont accept any tests from abroad.  The only place I know that they test abroad is a clinic in Hemel and this clinic treats Lyme.  If you think it is Lyme get tested there.  I am going for treatment in a few weeks.

4

Thanks Caroline, I have sent them an e-mail. Looking forward to the response x

5

Lyme lyme lyme!

Fibro after a mosquito bite sounds a little too much like a coincidence to me!

It can lie dormant for ages so be weary of any periods of remission.

6

What about contacting the tropical disease hospital and chatting to someone there. Sounds suspicious that u got bit in a foreign country and symptoms then started