Hubby's convinced he's got fibromyalgia - can anyone help please?

teddysmum

A.Penny.Saved wrote: »

If he is doing 10 mile hikes, spending lots of time down the gym and has no pain or exhaustion then I doubt very much that he has fibro.

Can fibro be cured? Yes I think it can but science is very far from finding that cure. I am far closer than science will be in the next 10 to 15 years.

I am a bit shocked that his doctor would "waste" money on such a case.

Especially when people with what should be obvious symptoms of serious conditions are sent away.

no.1swimmum

Can you not ask to be contacted if a cancellation becomes available.

I likewise have had chronic pain for nearly 6 years, had a positive lupus test, referred to rhumotology but basically told that at 50 it was impossible to suddenly get lupus!! I to have had one shoulder op, which wasn't much help have pain in my ankles, feet, knees, hips, lower back, shoulders, wrists and hands. Hospital discharged me told me it's all in my mind, gap convinced its fibo but won't re refer me, but did refer me to a psychotherapist!!! I can walk a step without pain! And without a diagnosis can't get any help I've been refused a disabled parking permit on 3 occasions! I despair of every feelong slightly better. I hope you have better luck getting a diagnosis...

FBaby

What consultant was he referred to? Neurologist, rheumatologist, something else?

The normal step before a doctor makes a referral would be to do blood test. Many similar symptoms can be explained by various deficiencies. Was this carried out by his GP? If so, did anything show up as abnormal?

woodyt

Many thanks for all the replies.
All the blood tests the doctor did came back fine.
The referral is with a neurologist.
It's just really difficult to know what to do for the best!
Thanks again.

fireblade28

no.1swimmum wrote: »

Can you not ask to be contacted if a cancellation becomes available.

I likewise have had chronic pain for nearly 6 years, had a positive lupus test, referred to rhumotology but basically told that at 50 it was impossible to suddenly get lupus!! I to have had one shoulder op, which wasn't much help have pain in my ankles, feet, knees, hips, lower back, shoulders, wrists and hands. Hospital discharged me told me it's all in my mind, gap convinced its fibo but won't re refer me, but did refer me to a psychotherapist!!! I can walk a step without pain! And without a diagnosis can't get any help I've been refused a disabled parking permit on 3 occasions! I despair of every feelong slightly better. I hope you have better luck getting a diagnosis...

You defo can get lupus at any point a quick google search will tell you otherwise.
https://www.ncbi.nlm.nih.gov/pubmed/17727302

I think I would be much more aggressive if something is wrong. Its not acceptable to be in pain for 6 years and you shouldn't just have to put up with it. Defo go back.

I would also start experimenting with different things. In theory as lupus is an overactive immune system if you gave it something else to attack i.e. more gut bacteria it should stop attacking your joints and go attack the bacteria. Start eating more fermented foods such a yogurt and sauerkraut. Also take probiotics such as VSL3. You also need more fibre to feed the bacteria.

Now this is not medical advice and keep pursuing the doctors but sometimes its good to play with non drug related interventions yourself to see if they help. Things like sauna, warm baths, ice, diet, exercise.

Nicki

woodyt wrote: »

Many thanks for all the replies.
All the blood tests the doctor did came back fine.
The referral is with a neurologist.
It's just really difficult to know what to do for the best!
Thanks again.

I was diagnosed with fibro by a rheumatologist who also investigated the possibility of lupus. I was as part of this process sent to a neurologist with a view to ruling out MS.

What if anything has the GP said to your OH about the referral?

Mrs_Ryan

lessonlearned wrote: »

I think what Pop Up means is manage symptoms rather than "cure".

I know from my own experience that if I stick to my healthy eating regime I remain symptom free.......this applies to my IBS and GERD as well as fibromyalgia and migraines. My blood sugar levels will also start to creep up again too if I start to backslide.

I Can indulge in the odd treat, say a bread roll or a piece of cake now and again but If I fall off the wagon for any length of time symptoms come back with a vengeance and I am in pain. A couple of slices of pizza has me in agony, so I just don't bother.

I just accept that this is the way it has to be. It can be a bit inconvenient at times but the benefits far outweigh any difficulties.

I am 65 and spent around 55 years with stomach problems and around 20 with fibromyalgia.

Now that I have found a way of controlling symptoms and feeling well there is no way I would go back to eating the way i did in the past.

All I can say is try it, you have nothing to lose.

If you experienced carb flu last time and it was just too rough then just take it a bit more slowly and give your system time to adjust.

Withdrawing from carbs isn't just a case of "craving" them. They can be very addictive and like any addiction going cold turkey is rough.

Thanks for the advice but doctor has told me under no circumstances to try it again. I was on the verge of being hospitalised last time as I've got a lot of other complex medical stuff going off with me and she said that the carb withdrawal definitely wasn't helpful and I didn't need to do it.

Pop_Up_Pirate

Mrs_Ryan wrote: »

Thanks for the advice but doctor has told me under no circumstances to try it again. I was on the verge of being hospitalised last time as I've got a lot of other complex medical stuff going off with me and she said that the carb withdrawal definitely wasn't helpful and I didn't need to do it.

There are no adverse affects when cutting out cakes, pizza, burgers, crisps, buns, bread, pasta, cereal etc. The most you might get is 'Low carb flu' which can make you feel ill. This is because your body has been used to dealing with an 'Easy' glucose feed and has to withdraw and learn to get what it needs from other sources.
The intake of fats needs to be higher too.

The human body gets all the carbs it needs from fruit and vegetables and doesn't need any of the processed stuff at all.

MonkeyDr

I am all in favour of a healthy diet, and welcome anyone trying out options to see what might help trigger or manage difficult symptoms, but I do find the dogmatic repetition of "just cut-out carbs" is potentially irresponsible. Mrs_Ryan has explained that she has other complex medical problems that this could affect (I can imagine some scenarios); why do others assume they know best in all cases?

Some people can't eat large amounts of fruit and veg for medical reasons (seriously). I can't see pizza being top of any dietician's plan, but cereals etc can be entirely sensible.

To the OP (and others affected): best of luck and I hope you find a way of managing the symptoms. I fear a 'cure' is a long way off, as the pathophysiology of fibro is not well understood.

trailingspouse

He may or may not have fibromyalgia - but whatever, he feels that something isn't right.

I wonder if he might respond to a concerted effort to be as healthy as he can be? If he smokes, stop. Eat a healthy diet (sensible quantities of good food and as little rubbish as possible), and get as much exercise as possible (including good bracing walks in the outdoors) - and plenty of water. It might not cure him, but it can't do him any harm and it may do him good. Basically, he may need to take matters into his own hands.