• Well done, you found us. THIS IS THE NEW SERVER

FIbromyalgia (1 Viewer)

Oct 29, 2016
4,530
53,662
Surrey
Funster No
45,842
MH
Carthago C Tourer
Exp
Motor Homing 5 years, caravan previously
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
 
Apr 11, 2015
5,480
56,176
hull
Funster No
35,812
MH
Laika Ecovip 300
Exp
since 1988 with breaks until 2009
Can't help jezport know my cousin's daughter suffers badly from it. Took a long time for diagnosis too.
 
Apr 17, 2016
6,063
35,943
South Coast
Funster No
42,523
MH
White One..
Exp
3 years….
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😁😁
 
Mar 23, 2012
9,612
32,404
sleights
Funster No
20,245
MH
c class
Exp
1
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.
 
Feb 18, 2018
3,454
11,660
South Ayrshire
Funster No
52,460
MH
Globecar Campscout
Exp
Since 2018
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.
 
OP
OP
jezport
Oct 29, 2008
5,108
6,096
West Yorkshire
Funster No
4,712
MH
PVC
Exp
since 2008
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.

Subscribers  do not see these advertisements

 
Oct 18, 2022
1,392
5,668
South West
Funster No
91,961
MH
Adria Twin
Exp
Since 1992
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!
 
OP
OP
jezport
Oct 29, 2008
5,108
6,096
West Yorkshire
Funster No
4,712
MH
PVC
Exp
since 2008
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
 
Oct 18, 2022
1,392
5,668
South West
Funster No
91,961
MH
Adria Twin
Exp
Since 1992
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!
 
Last edited:

Janine

LIFE MEMBER
Aug 22, 2007
14,441
43,433
A little bit left of Middle England
Funster No
142
MH
2006 A/S Nuevo
Exp
since 1988
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

 
Oct 18, 2022
1,392
5,668
South West
Funster No
91,961
MH
Adria Twin
Exp
Since 1992
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

LIFE MEMBER
Oct 2, 2007
14,059
112,576
North Wales.
Funster No
519
MH
A class
Exp
18 years s Motorhome (33years caravans)
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.
 
Sep 28, 2022
7
2
Funster No
91,556
MH
Conversion
Exp
Advanced begginer
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.
 
Sep 2, 2023
5
15
Rugby, Warwickshire, UK
Funster No
98,581
MH
Transit self build
Exp
3 years
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.
 
Sep 21, 2016
3,832
14,513
DERBYSHIRE
Funster No
45,235
MH
Frankia i740
Exp
since 2007
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.
 

Join us or log in to post a reply.

To join in you must be a member of MotorhomeFun

Join MotorhomeFun

Join us, it quick and easy!

Log in

Already a member? Log in here.

Latest journal entries

Funsters who are viewing this thread

Back
Top