Hello fellow sufferers, I can say that as I now know I am not mad after 35 yrs of not knowing I have FM but experiencing all the symptoms.

[Phanerzoic]

I have been living with Ankylosing Spondylitis (AS) & FM since my teenage years. However, I did not get an AS diagnosis until I was 35 and I have just recently (Jan. 2021) been diagnosed with FM at the age of 48.

Any advice on any specific symptoms would be appreciated - I particularly suffer with light sensitivity, hand, feet & back pain, as well as lethargy.

What would be your top tip to reduce symptoms of FM

Thanks in advance.

[Greenpeace]

Hi Phanerzoic , welcome to our forum.

I can’t advise on Ankylose Spondylitis, but I imagine what helps Fibro, would perhaps help that too.

What helps Fibro is Pacing yourself. Don’t try and do things at the pace you might have done before having a diagnoses. Do a little, rest a little. It sounds easy until you try it.

Hot soaks in the bath with a handful of Epsom Salts in it as it contains Magnesium, and that helps muscle pain. If you don’t have a bath, then you can buy Magnesium spray in any health shop.

Wheat bags that you heat up in the Microwave, put on sore muscles to relax them, or electric heat pads, and shoulder wraps.

A Tens machine, these are small sticky pads with electrodes in them, and you place the patch on a sore muscle and it sends a mild electric current through the patch to the muscle. You can buy them fairly cheaply on Amazon, or some GP practices sometimes lend them to try.

Light exercise, little and often. Cutting down on Caffeine, Alcohol (if applicable), and junk food. Eat as healthily as you can.

Physiotherapy and Hydrotherapy can also help.

You will hear, read, and be advised of lots of miracle cures for Fibromyalgia. Don’t be fooled into parting with your money, there is no cure, as we’d all be trying it. Some supplements can help, but only if you’re deficient, check with you Dr. before taking them.

Your Dr may have prescribed medication, this sometimes takes time to work.

For light sensitivity, try sunglasses.

Our main Website has lots of useful info, here is a link. fmauk.org .

Hope this helps.

GP. 😊😊

[Phanerzoic in reply to Greenpeace]

Hi Greenpeace,

Thank you for your advice as it is a bit of a minefield currently. I agree with the hot water benefits but my AS prohibits using a bath so I stand in a hot shower for a long time. I wish I could shower every hour as this usually gives me 30 minutes rest bite.

Thanks again,

Phanerozoic.

[Nelly1]

Hi

I have Fibromyalgia and AS.

Have you seen or been referred to Rheumatology? That is the best place to go. For your AS please enquire about biological therapy (Enbrel) it is 2 injections per week you do yourself and it’s helped me tremendously.

I’m also on methotrexate, tramadol, Zapain and naproxen.

It takes a while to get on it as they have to keep completing your Bath scores (pain levels and discomfort) I would keep a diary for now.

It’s really worth asking your GP for the referral to Rheumatology.

I hope you get the answers and help you need soon.

Neil

[Phanerzoic in reply to Nelly1]

Hi Neil,

Thanks for getting back to me as any advice is good advice.

I am currently taking Cosyntex monthly injections for my AS and just been prescribed Pregabalin for my FM. Have you ever taken Pregabalin, and if so how did you find it?

I see you are taking Zapain - I have never heard of it but just googled it - is this worth exploring with my Rheumatologist?

Thanks in advance,

Phanerzoic.

[Nelly1 in reply to Phanerzoic]

I’m sure Your GP could prescribe you Zapain as it’s not a controlled drug.

Yes I have tried pregabalin and Gabapentin but neither were successful for me but everyone reacts differently so certainly worth trying.

It is unfortunately trial and error until you get the ones which suit you.

Took me about 2 years to get the right Balance of medication.

I now take 1 Zapain 1 tramadol, naproxen, methotrexate once a week folic acid and my enbrel injections once a week 👍

You will get there you just have to be patient with it.

Don’t try too many at the same time otherwise you won’t know which are working.

Good luck 🤞

[Yassytina FMA UK Volunteer]

Morning , welcome to the forum, I see Greenpeace has given you some good advice , mostly what I would say, pacing is differently my way of coping during the day, and if you get days where your body is feeling rubbish , rest it out , and look forward to the better ones to come. I found the last couple of days with the Sunshine really lifted me as well just to sit outside , the warmth differently helps with me with my fibro aches/pains , il be be glad to see the back of what seems like a long Winter. I hope you enjoy reading posts here 😀

[Phanerzoic in reply to Yassytina]

Hello Yassytina,

I think you are right on the pacing yourself advice but I find this really difficult. I am getting better at it but sometimes events just take over. I think your advice on resting it out is my new target to attain.

Hope you have enjoyed the warmer weather this week and that summer arrives soon for every ones sake.

Be safe,

Phanerozoic.

[happytulip]

Hi, there is alot of information about light sensitivity on the lupus UK Healthunlocked site. Many of us struggle with the sun, I can't go out in the sun in daylight hrs even if only for a minute. It's a supportive group, just like this one. You might find some good info on there .

[Phanerzoic in reply to happytulip]

Hello Happytulip,

That is a great bit of news to receive as I was not aware of Lupus and light sensitivity. I know how you feel on this issue as I have to wear sunglasses and a wide brimmed hat not only outdoors but when I go into shops - the artificial lights are as bad as the sunlight; if not worse, as they are numerous smaller points of light focus!!!

Thanks for the heads up and I will take a look at this group as well.

Be safe,

Phanerozoic.

[happytulip in reply to Phanerzoic]

It's a big talking topic this time of year, it's our worst time going into spring. I probably won't leave my house during daylight hours until about September/October I expect.

[Phanerzoic in reply to happytulip]

I know how you feel on that but it is good to fight back against the issue and get out and about. My wife and I bought a caravan so I would be forced to go outside at the weekends. It does help mentally pushing back against the condition even if it is still a struggle physically with the light. I just make sure I am prepared for it and have recovery time thereafter. Getting into the countryside is a big plus and you do not get any of the artificial lighting of the city in the evening. Do you wear polarized sunglasses as these really help?

[happytulip in reply to Phanerzoic]

It's nothing to do with sunglasses in my case, it's absorption through my skin, even when fully covered in Factor 50 SPF clothing.

I literally cannot leave the house and be in the sun for a minute without developing a migraine and a big rash. Under UV lights I have almost instant collapse, joint pain, arrhythmia, rash and seizure like activity. So for me the risk is to high.

I am on meds that make the sun sensitivity worse unfortunately and I also have a mast cell condition. Not everyone is like me but there are a handful of us.

[Phanerzoic]

That does not sound like much fun for you. You must hate the summer more than I do, at least I can go outside for a while. It is interesting for me to find out that more people have multiple conditions now that I know I have 2. Have you had the problems since childhood or did they come on as you got older - your 20's or 30's? Mine have been with me since I was in secondary education but just never knew until I was 36 & 48 respectively.