FIbromyalgia (1 Viewer)

[jezport]

Has anyone here been diagnosed with Fibromyalgia. I could do with chatting to them.

 

[TinaLes]

Sorry to hear your news jezport, I had to Google the condition to know what it was, seems to effect people in so many different ways, so can you narrow it down to how it is affecting you, and how it was diagnosed/recognised please. I reckon a lot of people could have this and not know it yet.
Hope you find some form of coping with it, again so many options, might need to be a voyage of discovery to find the most effective one. Maybe some ex GP's on here may offer some guidance.
Best Wishes.
Les & TinaL

 

[scotzsue]

Can't help jezport know my cousin's daughter suffers badly from it. Took a long time for diagnosis too.

^{_{Subscribers  do not see these advertisements}}

 

[Coastal Cruiser.]

Still waiting to find out, my doctor put me on a high dose of steroids a few months ago as he was not sure if my symptoms are Polymyalgia or Fibromyalgia as they are very similar.
Another thing that threw him out was when they checked my inflammation markers they had more than trebled since taking the steroids that should have reduce them!!

The steroids have helped as I am not aching so much from my upper body but still bad on lower body.
Another issue is that the steroids seem to have pushed up my sugar levels near to a diabetic level
Now on monthly blood test to monitor what’s going on.

Also have an advanced stage of MGUS so that’s not helping
Still always someone worse off than me so just keep going best you can

 

[Reallyretired]

It was suspected that I might have fibromyalgia but turns out it is the more common polymyalgia rheumatica. Although similar symptoms the treatment is quite different.

 

[The Wino]

Still waiting to find out, my doctor put me on a high dose of steroids a few months ago as he was not sure if my symptoms are Polymyalgia or Fibromyalgia as they are very similar.
Another thing that threw him out was when they checked my inflammation markers they had more than trebled since taking the steroids that should have reduce them!!

The steroids have helped as I am not aching so much from my upper body but still bad on lower body.
Another issue is that the steroids seem to have pushed up my sugar levels near to a diabetic level
Now on monthly blood test to monitor what’s going on.

Also have an advanced stage of MGUS so that’s not helping
Still always someone worse off than me so just keep going best you can

It's really important to take the steroids as advised ( I'm not saying you don't!). If it is PMR and untreated a complication can be temporal arteritis which can lead to very severe complications including sudden loss of sight. The steroids can cause an increase in eye pressure so worth mentioning at your next eye test and maybe bringing it forwards ask your optometrist for their advice.

^{_{Subscribers  do not see these advertisements}}

 

[Grianan]

I’m very sorry you’re contending with this. My friend’s daughter has it. If you have any specific questions I’d be happy to ask her.

 

[Janine]

jezport I have had fibromyalgia for many years. PM me if you want to chat xx

 

[Two on Tour]

Has anyone here been diagnosed with Fibromyalgia. I could do with chatting to them.

Not diagnosed yet but I pretty well fit all the symptoms, the worst of which for me are the bouts of fibro-fog which I find very frustrating.

^{_{Subscribers  do not see these advertisements}}

 

[jezport]

Thanks for all the replies. I have all the symptoms of Fibromyalgia, excluding IBS. The problem is I have other things that create chronic pain, including 2 disc bulges with spondylolisthesis and arthritis in my hip. When I went to the MSK dept one girl said she didnt expect me to have the level of pain I do by looking at my scans and X-rays. She did full blood tests that ruled out rhumatoid arthritis and other things.
I suffer pain in a number of areas which are not explained away by my other medical problems, pain varies from dull to throbbing to stabbing and can last weeks or days and go away. I suffer pins and needles in my hands, headaches that can be dull and last days or be a migraine. I struggle to get to sleep but can be tired and feel ready for bed at 6.00PM. And I suffer from feeling low, possibly mild depression. I also dont have the memory I used to have. I used to be great at pop quizzes and now struggle to remember most of the answers. I take strong painkillers for the pain and anti inflammatories. I was on amitriptyline but found it made me very tired so came off it after many years.

If those with knowledge on the subject could let me know their opinion on if they think I may have it I would be most grateful.

 

[seasideBill]

I don’t want to diminish anybodies experience of FM but I think a lot of folks get ‘diagnosed’ as a bit of a catch all in the absence of any other measurable medical explanation. As those affected will know, there is no definitive test for FM and symptoms vary widely. For some it’s an occasional flush of mild symptoms while for others is utterly debilitating.
The good news is that folks can and do make a full recovery but I think a strong focus on positive mental health and lifestyle is as important as any pills you might be prescribed.
I think talking to others can have mixed results, depends who you talk to!

 

[jezport]

I don’t want to diminish anybodies experience of FM but I think a lot of folks get ‘diagnosed’ as a bit of a catch all in the absence of any other measurable medical explanation. As those affected will know, there is no definitive test for FM and symptoms vary widely. For some it’s an occasional flush of mild symptoms while for others is utterly debilitating.
The good news is that folks can and do make a full recovery but I think a strong focus on positive mental health and lifestyle is as important as any pills you might be prescribed.
I think talking to others can have mixed results, depends who you talk to!

This is why I would like any information from those who know the most about it.
The diagnosis of FM can be a cant find a reason so diagnose FM

^{_{Subscribers  do not see these advertisements}}

 

[seasideBill]

This is why I would like any information from those who know the most about it.
The diagnosis of FM can be a cant find a reason so diagnose FM

I was briefly diagnosed with it, but symptoms eventually went away with a brief relapse about 7 years later. I might be FM, who knows, but tbh I wasn’t interested in a diagnosis - didn’t want to be diagnosed with something that doesn’t have a cure. Instead I was only interested in getting better. I’d offer you two bits of advice 1) don’t spend hours researching FM on the internet, it will only make you miserable and more likely to exhibit new symptoms. 2) take care of your mental health, depression and anxiety exhibit a very similar set of physical symptoms to casebook FM. Don’t give in to the symptoms, you can beat it!

 

[charliesgrandad]

Has anyone here been diagnosed with Fibromyalgia. I could do with chatting to them.

My wife has it and she chats on a Fibromyalgia group on line

 

[Janine]

I don’t want to diminish anybodies experience of FM but I think a lot of folks get ‘diagnosed’ as a bit of a catch all in the absence of any other measurable medical explanation. As those affected will know, there is no definitive test for FM and symptoms vary widely. For some it’s an occasional flush of mild symptoms while for others is utterly debilitating.
The good news is that folks can and do make a full recovery but I think a strong focus on positive mental health and lifestyle is as important as any pills you might be prescribed.
I think talking to others can have mixed results, depends who you talk to!

FM is indeed very complex and everyone has a different response to it.

With all due respect, your responses amount to telling people to ‘snap out of it’.

Not always possible, I’m afraid.

^{_{Subscribers  do not see these advertisements}}

 

[seasideBill]

FM is indeed very complex and everyone has a different response to it.

With all due respect, your responses amount to telling people to ‘snap out of it’.

Not always possible, I’m afraid.

I’m sorry you feel like that. As you say we all have different experiences. A GP gave me that diagnosis. I’ve reflected a lot on my own experience and how I dealt with it - it was a difficult period in my life. I firmly believe that dealing with it mentally is as important as any other therapy. That’s my personal experience, and it was offered constructively. FWIW I wouldn’t ever tell anybody to ‘snap out of it’ and my comments were intended to be helpful. I won’t make any further comments.

 

[Carol]

seasideBill with respect if you have full blown polymyalgia like I did you can't snap out of it , I could not even lift my legs up to get in the Hymer getting out of bed in the morning was agony I have been on steroids for it for three and a half years and at the moment it's in remission the thing with polymyalgia is it can go away but Fibromyalgia doesn't. The one thing I would say is
If you go on steroids long term do watch your weight it is a problem with steroids but a bigger problem getting the weight off. jezport I wish you all the best with the pain management there are some very good groups for polymyalgia and Fibromyalgia and the steroids to give a lot of relief from it.

 

[Gadget Man]

I had a young thing once and she was pretty much destroyed by it and how exhausting it is. That was long before I came to know that many of my similar symptoms from other conditions were actually sickness, rather than what I assumed everyone else to be.
(Disclaimer: just a satisfied customer)
I know of some natural meds that should help with pain and give a boost, but like most things that are natural and actually work, they are not exactly available over the counter. In the interests of not triggering the plant medicine po-lice, I'm only going to put that in a pm if interested.
Suffice to say that a complete change to fully organicly produced diet, cut out all food additives (especial aspartame) and GM rubbish will begin to detox the body and has defiantly helped. The detox in itself will suck. Also herbal supplements, like Moringa and especially vitamin D3. Be very aware that big pharma poisen will likely make you worse in the longer run.

^{_{Subscribers  do not see these advertisements}}

 

[Karen James]

Has anyone here been diagnosed with Fibromyalgia. I could do with chatting to them.

Hi. I've just joined this group. If you still want to chat, I have had fibromyalgia for 11 years.

 

[jezport]

Up to now I've had a number of my symptoms diagnosed. I have osteoarthritis in my hip spine and shoulder. Also 2 disks bulged and a few other thing so think I just have a lot of different things going on.

 

[Karen James]

Up to now I've had a number of my symptoms diagnosed. I have osteoarthritis in my hip spine and shoulder. Also 2 disks bulged and a few other thing so think I just have a lot of different things going on.

Ah, ok. It's not easy when you have lots of things going on. I have degenerative disc disease at c3/C4/C5/c6 and L5/S1 and have had my neck fused at 2 levels. I also have bursitis of my hip. Lots of other things going on too so I understand what it's like.

^{_{Subscribers  do not see these advertisements}}

 

[Gina M]

My OH has it. He started doing circuit training, weight training, high intensity work outs and kick boxing. He loved it and for months he kept on with it as it helped stop his aches and pains. The physio at his GP surgery told him it was the best thing he could be doing. But then he injured his knee so only does weight training and kick boxing for now but after thinking he was going to have a knee replacement (after consultation with a specialist) he now has less pain in his knee, is so much fitter and has lost a lot of weight. He now nags at me that I need to start doing weight training. He has started taking an extra Amitriptyline before bed and he sleeps all night now.