Recently diagnosed with fibro

[Cobbie]

In so much pain, can hardly function. Shoulders, hands, back, ribs, weakness in legs. Dr. not very helpful. Any suggestions on where I start to fight the pain ?

 

[sunkacola]

I understand, Cobbie, and welcome to the forum. And...I sure do have suggestions!
Read my advice post which is pinned at the top of the General forum. It is all tried and true and if you implement those things you will find out what works for you to help manage and mitigate the effects of this.

Any questions.....just ask.
Need support, empathy, understanding? Let us know. We are here for you.
Need to vent? We have a place for that as well.

Let us know if there's anything else we can do to help.

 

[Jemima]

In so much pain, can hardly function. Shoulders, hands, back, ribs, weakness in legs. Dr. not very helpful. Any suggestions on where I start to fight the pain ?

Hi Cobbie,

I see you're recently diagnosed, and I've been where you are, as have most of us here on the forum. You're not alone - we're here to help - and you'll find lots of good info here.

When I first experienced the full wallop of fibro, I felt overwhelmed that there was nothing I could do. Over time, I flipped to feel a little overwhelmed that there were so many different things that I could do! While there isn't a simple cure to fibromyalgia, most of us can find things that help a bit - and together, they can layer up to make a really big difference to how we feel. This is a condition that you need to gradually learn how to manage, and all-importantly how to avoid triggering. We're all a little different, so it's a case of becoming your own guinea pig, and exploring until you understand yourself uniquely.

It's not going to be perfect, but I believe you can get to a better place than you are today. I've managed to get myself from bed-bound with overwhelming full-body pain and exhaustion a couple of years ago through to pretty good functionality today, be it within some pretty specific parameters. My wins came in the form of self-pacing, stress and sleep management, very gentle exercise, and a supplement regimen. I also worked with a therapist to get a handle on the stress response I was having to pain - I had to accept its presence, and acknowledge that it wasn't a threat to my safety. Gradually, I learned how to trigger big flares less often, and to help them not last so long. You'll discover other people here in the forum that found other things had a big impact on them, so explore until you find things that make a difference for you.

While it's important to grieve for what's changed, and process that fibromyalgia likes to stick around, the good news is that you are not totally at the whim of this thing, and you will get a sense of control back as you go through the process of figuring this out.

Good luck

 

[Cobbie]

Hi Sunkacola. Thanks for responding. Not sure how to navigate this website so I don't know where to find your advice. Pinned at the top of the General Forum....not sure what that is or where. Any direction ?

 

[Auriel]

Cobbie how you getting along? and yeah good drs are a godsend I’m lucky right now I got a good one but I’ve been through some terrible ones,1st one told me it was all in my head!(I think he was trying to impress his young female colleague) anyway here’s some emoji ice cream to cheer you up

 

[Cobbie]

Can anyone here tell me, in addtion to the horrific pain, does fibro affect your vision? I wear contacts, put them in around 10:00AM and as the day goes on, my vision gets very blurry. I put drops in but once they go away, my vision is blurry again. Any thoughts appreciated.

 

[Auriel]

ive had times when my visions gone rainbowie and everything looked like it was in a puddle of water but the dr said it was cluster migraines even though I wasn’t always getting headaches with them + my optometrist said my eyes are getting worse he said Its cos my thyroid anyway ,you thought about changing your dr? maybe see an optometrist?

 

[Cobbie]

Hi Auriel. Rheumatologists around here seem to know nothing and offer little help. Hope I can find some doc who will explain fibro and tell me everything I need know. I am hurting so badly just about everywhere that I can barely function. I read some posts that were from 30 and 40 year old women who said their bodies were so painful that they had to hire someone to take care of them. They couldn't even get out of bed. Compared to probably most of you, I am ancient. 72 years of being totally independant and suddenly I belong in a nursing home. I have a home to take care of (grass to cut, shrumbs to trim, staining 2 decks and steps, and most importantly taking care of my 8 year old German Shepherd who was just diagnosed with inoperable cancer. Radiation and chemo treatments are costing me a fortune but I have had a G-shep by my side since I was 17. Not married, lost my sig other (Bob) 5 years ago after a 41year wonderful relationship. Raised by g-parents, no siblings, no close girl friends....always working. How do you function....seriously.....I tried to cut the back yard grass last week and took 2 hours and almost called an ambulance. Sorry to all you guys who sound so up, but I am in so much discomfort I don't know how to deal. Kudoos to all of you who have reached out.

 

[Auriel]

we just adapt to it if I could change it make mine and everyone else’s go I would do it in a heartbeat there’s lots of things I can’t do anymore it’s effected every area of my life your not ancient you’ve had decades more life experience than younger people and some really good ones by the sound of it . your not on your own you got us + I find speaking with people with the same condition quite comforting, try and get some rest.we're gonna be here for you I’m going to bed now ,goodnight cobbie

 

[Jemima]

Can anyone here tell me, in addtion to the horrific pain, does fibro affect your vision? I wear contacts, put them in around 10:00AM and as the day goes on, my vision gets very blurry. I put drops in but once they go away, my vision is blurry again. Any thoughts appreciated.

Hi again Cobbie,

Ah, this is one of the lesser known fibro symptoms, or at least it could be. Apparently fibromyalgia can cause dry mucous membranes; so dry eyes, less saliva in the mouth than usual - that sort of thing. I have had dryer eyes (I also wear contacts) since fibro landed, and also had trouble with tartar on my teeth for the first time in my life. Interestingly, this seemed to improve quite a bit as all of my other symptoms improved. Fibromyalgia can also cause photosensitivity, so finding it harder to look at/be exposed to bright lights; for example, making night driving more challenging.

With that in mind, I suppose it could well be fibro causing your eye issues. Perhaps try looking into other contact lens solutions, keeping up with the eye drops, and making sure you're really well hydrated. You could also try monitoring to see if your eye blurriness tracks with your other symptoms. If in doubt, go get a checkup with an eye doctor.

I'm sorry - this isn't fun, is it!

 

[Jemima]

Hi Auriel. Rheumatologists around here seem to know nothing and offer little help. Hope I can find some doc who will explain fibro and tell me everything I need know. I am hurting so badly just about everywhere that I can barely function. I read some posts that were from 30 and 40 year old women who said their bodies were so painful that they had to hire someone to take care of them. They couldn't even get out of bed. Compared to probably most of you, I am ancient. 72 years of being totally independant and suddenly I belong in a nursing home. I have a home to take care of (grass to cut, shrumbs to trim, staining 2 decks and steps, and most importantly taking care of my 8 year old German Shepherd who was just diagnosed with inoperable cancer. Radiation and chemo treatments are costing me a fortune but I have had a G-shep by my side since I was 17. Not married, lost my sig other (Bob) 5 years ago after a 41year wonderful relationship. Raised by g-parents, no siblings, no close girl friends....always working. How do you function....seriously.....I tried to cut the back yard grass last week and took 2 hours and almost called an ambulance. Sorry to all you guys who sound so up, but I am in so much discomfort I don't know how to deal. Kudoos to all of you who have reached out.

It sounds like you're in a really tough position, which is going to make managing fibro all the more complicated. I get it completely that optimism probably feels totally out of reach, and I'm sorry you're dealing with so much alone - the loss of independence is one of the most brutal aspects of this thing. It's a tough situation that if your life demands too much, your body might well force you to stop. I think the answer in terms of how people function is that a lot of people simply can't, and wind up relying on others. That said, you could try to identify where you've got some wiggle room - for example, planning the things you have to do and breaking them down into as small chunks as possible, with rest in between. Pacing is crucial if you want to avoid re-triggering yourself, and - for my experience at least - the further into a flare you are, the more self-propelling it can be. If there's any way for you to get some help around the house, it might be worth considering as a way to give yourself the space to get your symptoms to dial down.

Finding a helpful doctor might be transformative - know that they will likely put you on medications, and may not offer much else of value. I think that doctors who really understand fibromyalgia are few and far between, so doing your own research is probably going to be important. To get to Sunkacola's advice post, click on "Forum" on the top left of this page, then click on "General discussions about fibromyalgia", and finally "My advice for managing fibromyalgia (especially for newcomers)".

 

[sunkacola]

Here you go:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org