Living with fibromyalgia

Hello everyone, I need your advice. To make a long story short, I have only been dealing with fibromyalgia for 8 or 9 months. It started with simple body aches but over time my symptoms got worst and I now have to take pain medication for the body aches and I’m tired all the time.

I have just spent the last 4 days in bed. I seem to be in a vicious cycle. Within an hour from when I wake up my body starts to ache. Since the doctor has not yet found any medication to ease my body aches, I have to take a pain pill. For the next hour I try everything I can think of to get some relief until the medication kicks in. Even though I just woke up, I’m so tired both physically and mentally that sometimes I’m in tears until the medication starts working.

Once I get some relief, I get something to eat and then a couple hours later I’m so tired that I go back to bed. Oddly enough, I can usually sleep for another 6 to 8 hours until I wake up again and start the entire process all over again. When I can't sleep I have no energy and can't concentrate.

Is this how everyone with fibromyalgia lives?

Those who have read my previous post know that I have to sell my house because I have no money coming in, but due to my fatigue I’m going to have to hire someone to clean and pack for me. (Thank God for credit cards) My plan is to live off the money from the house and hope that my disability is approved before my money runs out. However my doctor told me last week that most people with fibromyalgia get turned down because, on paper, there is nothing wrong with me. The doctors cannot find the cause of my problem, (no disease) so on paper I’m fine. That also goes with my insomnia and my anxiety.

I then went to my therapist and told him my situation hoping for some useful advise. You know what he said? “Be like water.” He knows I have been though some tough times in my past and got through it so he tried to convince me to adapt and be like water. How can I adapt when my life goes from body aches to sleep and back again. I have no energy to adapt. If I were to be like water, I would soon find myself in the street.

Is this the life that people with fibromyalgia get to live? If so, it sure dose suck.

[Royalspec01]

First of all your doctor needs to be testing you for illnesses even though you probably haven't got them when the results come back clear then this accumulative evidence is how diagnosis is reached and secondly you could ask your doctor if its possible to have a referral to a rheumatologist this person is qualified to verify your condition and its affects on your range and lifestyle. And thirdly you really need to seek advice from and ad vocative agency like Citizens advice who knows but there may be other help you can get if not when it comes to your claim they may help. Also while you can apply to the local council online to go on the housing list the local authorities have a duty of care to locals in their borough it doesn't guarantee housing but it helps towards it and it may well do too. Or even a list of landlords that accept people on benefits and you can claim ESA lower rate until your medical. Gentle hugs I pass out a lot from my exhaustion myself so sorry your having it so tough right now lots of gentle hugs and some good luck to go with it sorry I don't know more.

[Hidden]

Thanks for your advice. I have been seeing different doctors. They each have found nothing wrong. I did see a rheumatologist and all he did was take blood. When everything came back normal his only suggestion was to go to a neurologist who also found nothing wrong. Is there more that the rheumatologist should have done? I read online here that someone was seeing an endocrinologist. Should I go and see them next?

I understand that the accumulation of all these doctors is to rule out any disease, but on papers it looks like I'm healthy. So far I have had my MD take blood, seen a rheumatologist who only took blood, seen a neurologist who took more blood and did a nerve test on my muscles. (EEG I think) I have also had a sleep study which came back normal and I'm seeing a psychiatrist and a therapist. Is there any other doctors I should see? I would think that there should be other test that should be done like an MRI. After all, they say that fibromyalgia is a neuro-chemical imbalances in the brain.

I have a lawyer working on my disability case but he has not mentioned ESA so I don't know if we have that here in the US but I will check it out. I know they have low income housing but I have no income. I guess I will just have to take it one day at a time and hope for the best. Getting disability here in the US can take 6 to 12 months if you can get approved.

[Marz in reply to Hidden]

Maybe read the thread on here from The Author - Diagnosed a month ago ! Have made comments you may wish to consider....so you do not need to see an Endocrinologist - yet !. Lots of reading should help you on your journey !

[fibroisonthego in reply to Hidden]

I was just diagnosed last year, as things are getting progressively worse. However, mine is horrible with stress. It was a rheumatoid specialist that diagnosed and overseas my pain. I'm lucky to have found him, as I've been told "See a shrink" more than once. For me, watching sugar and caffeine intake helps to keep pain down, and I have a set routine for getting into bed to get enough rest. Sleep is a completely different story, but resting my body helps - most days. When you feel it flaring up, take a few steps back. And yoga helps me. We are all so different, but honestly, knowing I'm not alone has been a huge help for me - reading what others say, getting ideas, etc. Find something that makes you very happy (without wearing you out too much) and commit! Best of luck!

[Izumi]

I am no expert but my advice (given to me) find a doctor under 40 tell them you suspect Fibromyalgia and ask to be referred again to a rheumatologist specifically for Fibro. There is a test they can do it involves 19 pressure points. When touched a Fibro sufferer feels pain whereas others feel the touch.

Arm yourself with information on FM. DONT assume you have it in case something more serious is missed.

Keep a diary so you can be specific.

Getting carried away. I wish you all the very best.x

[Hidden]

Yes I think I need to find another rheumatologist. I have heard of these pressure points but my rheumatologist did nothing like that.

Thanks.

[Julie63 in reply to Hidden]

You definitely need to be seen by a rheumo cons again Mark. He needs to do the trigger (pressure) points test to diagnose if you do have fibro. Also, ask them to do more investigations on your blood tests. Have you had thyroid probs checked? Low vitamin D, iron, magnesium, are just things off the top of my head that could be causing you problems.

Yes, living with a fibro flare up can be like you describe - but it doesn't have to be like that all the time. You need pain meds - meds that can help for different kinds of pain - some tackle nerve pain, some joint pain. I'm on Pregabalin which helps the nerve pain I get in my back, for example. There's an anti depressant that I take - Amitriptyline - that helps you sleep & eases the depression too. You need to get your gp/md to start discussing these sort of things with you.

Best wishes & Good Luck,

Julie xxx

[Hidden]

When I first started having body aches, my MD did some blood work and found that I have hyperthyroidism, not hypo. He put me on some thyroid medication and now my levels are normal. A blood test from a different doctor discovered that I was low on vitamin D so now I'm taking a high does of vitamin D. Unfortunetly I'm still having the severe body aches. I will defenetly find another rheumatologist. I have never heard of Pregabalin or Amitriptyline but I will bring them up with my doctors.

[Hidden]

Hi Marks,

you really are having a hard time of it, and it must be costing you a fortune. With the right meds & looking after yourself and listening to what your body is telling you, you can "manage" your Fibromyalgia. Firstly though, I don't think your health care team are knowledgeable in Fibro. Otherwise the Rheumatologist would have done the points test, it is a test that Rheumatogists all over the world agreed would be used for the diagnosis of Fibro. There are 18 points in your body that when touched lightly, are felt to be very painful and 11 out of the 18 points must have this reaction. Also the pain must be above and below the waist. All the previous tests and blood work will have been done hopefully to rule out other conditions.

What to do about it? If it were me, I would ask to have a copy of all the tests done thus far, and then look for another team of doctors and specialists. As one of the other posts above says someone under the age of 40. Hopefully they will be knowledgeable in FM, although there are no guarantees.

What you must do for yourself is to go on to our website (sorry, fibro fog has set in and I can't remember the full name) but I'm sure someone on here can give you all the

details. Its one of the best sites that gives you reliable, up to date information on fibro. Arm yourself with knowledge, write it down, and bring it with you to your appointments. Don't allow yourself to be fobbed of. Fibromyalgia is real, and it can make your life hell, but with an understanding doctor it can be "managed". In the US you pay for your healthcare, here in the UK we have the NHS. If you read some of the posts on here you will see that most of us will not put up with Drs who fob us off.

Sorry for such a long post. I hope it will be of some help to you. Keep your spirits up, and keep coming on this site and letting us know how its going.

Good Luck

GJ xx

[Hidden]

Thanks GJ, yeah the Rheumatologist I was sent to must not have had experience with FM or was just too lazy. I will check out the website and find a new Rheumatologist. Yes unfortunetly we do have to pay for our health care and I'm finding out that some test are covered by my insurance and some arent. I'll worry about that later. For now I will keep looking for the right doctor. Thanks for all your advise.