is this just Fibromyalgia

[Geeforce99]

Hello great forum peoples

I have recently been advised I have fibromyalgia, prior I was advised I have Sjögren, undifferentiated connective tissue disease, raynards and hypertension.

With fibromyalgia does this sound like it has flared I have waves where it affects shoulder then hands then feet, then neck to head, now toes feet cramping with sudden tremors then moves to outter left thigh quads and feels like it’s being attacked burning and stabbing like something is eating the tissue then goes to top of bum to lower back. shoulder and knee go weak like it’s about to dislocate.

sitting is hell and laying in bed is hell what can you do to help these symptoms ? Advice is welcomed please

Thank you 🙏

[Yassytina FMA UK Volunteer]

Hello , have you been diagnosed yet with fibro ? you sound like you have a lot going on right now , resting and pacing is my biggest tip, and awkward I know getting comfortable but like today my body is boss and I’m having too do this more, the weather outside does not help ,cold weather irritates. Xx

[Geeforce99 in reply to Yassytina]

Hi Yassytina 👋

Thank you for your reply, my rheumatologist has advised me all my symptoms are in line with fibromyalgia and he has written to GP to ask them to treat me for FM. I have only been back at work three weeks now off again due to this flare up due to the weather or something else, thanks for idea of get away when I can would be nice to get down to the coast in Norfolk for few days next year as only couple hours away. Roll on next week when it’s not as cold.

All the best take care xx

[1whitestar]

Hi, yes my symptoms are just like this I was diagnosed with fibromyalgia ,

[Geeforce99]

Hi 1whitestar thank you for confirming your symptoms are just like this, it is helpful and nice to hear from another with this awful illness. Best wishes and take care xx

[Lillylilac]

Hi Geeforce99Welcome to the Fibro warriors club. I really feel fir yiu as it us a horrible illness. All your symptoms are what I have plus others. I am lucky as I am now retired and don't work which helped me a great deal. Otherwise as the person has said before pacing is your friend with this illness and even that unfriends you at times.

I was referred to a fibro course within the pain clinic department, it really helped me at the beginning to understand what it was. Ask your GP what support groups are out there for you. This has been a fantastic support group for me. You get many people asking questions and get a lot of good advice back. It has been invaluable to me.

Hope you find some relief and way forward when you go back to your GP.

Much love and gentle comfy hugs

Lilly x

[Geeforce99]

Hi Lillylilac

Thank you for you’re reply

My GP just said take the medication and hopefully I will improve and get back to it, he said support is online. That’s all the help

I need to get back as more sick days will mean my job will be no more! previous long term sick people have been made redundant so that’s my fear really not looking good.

It’s all work and have no life, as you need weekends to recover, I can’t do anything as it means then you can’t work and function at work there must be allot of people in the same boat.

Live to work and pretty much can’t do hobbies as just can’t think or have energy to do them anymore rest rest rest

You need to think next week might be better what can you do 👍🏻

😃🙏

[smiile]

I totally agree.

I too have had to sacrifice other things to keep my job going. I love my job as pastoral support in a SEND school and am determined to keep going. Pace is my only advice too. I now work 3 alternate days so that I can recover in between and have time for physio/ washing/shopping etc. My colleagues think nothing of dashing around a supermarket after work, not a chance! Also since I found out my vitamin D was very low, upping that has helped.

Take care.

[Jacksono]

HiWhat you describe is exactly how I feel. Diagnosed with fibromyalgia, Raynauds, arthritis, hypermobility and already had sciatica and bi polar 🤦. I did give up work, but I wished I hadn't. I have had a few little part time jobs, but not having that need to get up because you are relied upon, doesn't help you fight to keep a normal life. Unfortunately, it gets to a point for me where, after 2-3 months I get so ill that I'm not usually kept on. But I have a daughter with ASD and looking after her while trying to keep a job is very stressful and I burn out and flare up.

Anyway, what I wanted to say was that I too feel like I have something other than fibromyalgia. I spoke to my doctor and said, but the pain, the tiredness, the numbness (my feet and ankles go numb/dead and I can't stand up) the shooting pains etc etc and he replied, yep that's fibro. I couldn't believe it could do this and make me feel like this. I was sure there had to be more, sometimes I still think there is. I think it's because I knew very little about it and it mimics other illnesses in parts. It also isn't openly discussed or is as well known as other illnesses, so people around you don't realise how bad it can be. My husband says he understands, but I don't think you can unless you've woken in pain everyday for years. It's difficult for people to understand what they can't see or feel.

Be kind to yourself, listen to your body. It's hard when you can't sleep because every part of your body that touches the bed hurts, but you're so tired you can't bear it, but look back or keep a diary to see what happened in the run up to that to see if you can make any changes or do things differently. It's now a life long intense look into all your actions, emotions and even foods, to discover what you can and can't do, but you do get a better understanding of yourself and it has really helped me to regulate my emotions, as I was an angry person and I've had to let that go and learn to relax.