I'm new.

[Lypsie56]

I'm new on here. I have ME/CFS and more recently Fibromyalgia and am trying to inform myself on the condition. I see that the symptoms are the same as ME/CFS but the pain is more prevalent.

I was wondering why the ME/CFS charities dont work together as the two conditions often go hand in hand.

I've not had an official diagnosis, just my gp mentioning that it sounds like I've got it. I've got all the symptoms. I've never been referred to a Rheumatologist or any other specialist except for my ME/CFS. Do I need to get a diagnosis from a specialist?

Any advice or info would be appreciated.

Thanks.

[Yassytina FMA UK Volunteer]

Hello and welcome I too have Fibro/Cfs and (Treated sleep apnea thrown into the mix,) the two are quite similar and it was harder getting diagnosis for CFS . My doctor gave me the diagnosis, I’ve never been too a rheumatologist only a clinic for CFS. It would be helpful to get an answer either way from your doctor concerning the Fibro , some will refer to rheumatologist if not completely sure. Yes pain can be horrid at times ,some seek pain relief that helps , alot of members will try pacing method for Fibro which I find very helpful, I differently try not too go without a warm soak every night in the bath , that’s a must. I do use pain relief rub in gels on most tender places (me it’s right down shoulder blades, lower back, calf muscles) , check with pharmacist 1st if on any meds. Differently the forum is a good place to read posts and interact with members , helpful advice always helps .

[Jaycee18]

Diagnosis for fibromyalgia tends to be more a ruling out of other conditions than anything else. Some GPs seem happy to do this themselves others will refer to rheumatology. Either way you will then normally be passed back to GP for ongoing management of the condition. Although in all honesty many of us seem to self manage as much as anything.

This may be through the medication route, often a combination of pills to help with sleep and pain. Or some prefer the natural route - exercise, pacing, diet, supplements, Epsom salt baths, heat packs, weighted blankets, TENS machines etc.

Personally I go for a mix of most of it.

It really does seem a case of trying different things to see what works for you and certainly some of the natural aids you could be trying whether you have a formal diagnosis yet or not. Which is why a forum like this which can offer support and ideas is really helpful.

Hope you find what works for you. Take care.

[Lypsie56]

Thank you so much for your replies. It's good to hear from others who have the same conditions. It sounds like everything I'm doing to help with the CFS applies to the Fibromyalgia. I have booked to see a Naturopath and an Aromatherapist as I used to have massages which helped my CFS.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome. You will find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

[Gigiruth]

Hi Lypsie56Welcome

I have found this group imformative and supportive.

I have fibro,autoimmune condition and sjogrens.

I would suggest bath as well,epsom salts or sleep bubble.I have to avoid chemicals as much as I can. I find stress makes me flare.

I have found it usful to keep a diary so I can identify what causes flare ups.

All the best in finding what helps

Take care

Gigi

[Lypsie56]

Thank you so much for all your replies. I do take Epsom salt baths. What is a sleep bubble? I do relaxation, meditation and gentle yoga and take supplements. This is to help with my ME/CFS. I was wondering if there was anything different that could help the Fibro. I suppose its trial and error. What works for one doesnt help so much for another.

[JayCeon]

Hi Lypsie,

I spose sleep bubble is short for "Mr. Bubble Calm & Sleep Bubble Bath"...

There are actually I find a lot more things you can do for pain than for fatigue: Find your sweet spots of each activity, get all local pains down with various exercises, esp. stretches (as you're doing with yoga, but maybe more specific? youtube), acupressure (expert first, then more and more self-applied) and supps (I count 30 altogether, of these praps omega 3, the amino acid GABA and the enzyme serrapeptase are for pain, not fatigue).

[Lypsie56 in reply to JayCeon]

Thanks for your suggestions. I find Aromatherapy massage helpful.