Fibromyalgia??

mellman01

Hi all, now because it’s me nothing is going to be straight forward now is it! please read on.

The 3 things I have problems with are these.

Gout.

OA of both patella.

Cervical spondulosis between the C6 & C7 vertebra with two fused i.e. C1 & C2.

So with these's 3 medical problems in mind can you tell me what symptoms do those with Fibromyalgia get?, and do they wildly differ from person to person.

frogmorton

Hi Mell

I think you can have fibro along with almost any of those....

My ex MIL has fibro and cervical spond

I know someone else who has it with OA.

Are you going to be investigated for it soon Mell?

Think it woudl be a good idea.

Love

Toni xx

dreamdaisy

I knew someone with fybro only, she used to get very, very tired, had general aches and pains, generally felt unwell. It's not a pleasant thing to have and it can run alongside other conditions. I'm not sure if it's an auto-immune doodah but it wouldn't surprise me if it is. There are some threads already extant about it, have a search around here, some were as recent as last week, I think. DD

skezier

Hi Mel,

As i understand it, it comes with severe fatigue and pain of the muscles and connective tissues. Its got recognised pressure tests that mean bad pain if pressure is put on them. Is there a reason why you have got it? See my neck is shot as is my lower back and both create spasm and pain in muscles but not in the way Fibro does.

Hope you enjoyed some of your hols? Cris x

mellman01

Hi Skezer Toni and DD, I ask as I am off to se a Rheumatologist and wondered what the symptoms are, I have always had real problems with me neck it’s always blighted me, really painful like living with bad whiplash, the symptoms I get are tingling in my fingers from time to time, I also can’t stand my works pass or clothing around my neck some day’s, I have put up with it for around 28 years I only had if diagnosed after an MRI, my old GP use to tell me it was rye neck it was only after a locum sent me for an X Ray did they find it, I generally don’t sleep well always wake up around 2-3am from knee or neck pain, I also get various levels of tinnitus from it when it’s really going for it, I can’t do things like lifting objects above head or digging which is odd, but when I do it doesn’t take long before I end up with a really horrendously painful stab of pain that brings me up short I just have to stop what I’m doing sit down and wait for it to go as if I try to keep moving it hits me again.
I also get a really tight shoulder and a feeling like the skin is burning, and my lower neck muscles get really tight, this can be seen and felt as a lump around the right side of C7 and into both shoulders discomfort also travels up the sides of my neck and you can see if it’s bad sometimes as my ear and or ears go really red!?, in the past my neck has also locked up and I have to force it to crack to free it up this was always first thing getting out of bed, I also have a lot of headaches and my concentration is effected by it, I’m also light and sound sensitive when it’s bad and get generally snappy and bad tempered.
Add the really odd flares I get form my knees I just wondered if it could be a form of it, I get normal OA pain in me knees but the flares I get always start with a tingling and in my feet and toes and a really cold feeling down my outer shins, this builds over a few days until it slowly changes to a really horrible deep ache that get very unpleasant if I try and stand up, Tramadol and OxyNorm doesn’t stop it, when a flare passes I feel totally washed out and it takes a few days to get back to what is close to normal for me, when I am having a flare the only thing I can do is rest and that normally means a week house bound, and this is what is pissing of work big time, bottom line is I am caught between a rock and a hard place.
But my real concern is this is now going the same way as my neck problems did all those years ago ie they dismissed it and me for over 27 years, I’m starting to feel that none of the medical brigade believe me, well only my GP but what good is that, if I can’t find out what is causing all my symptoms I am going to get the bullet from work no questions asked I’m in deep trouble and am desperate for an answer and a reason why, I have Googled this illness before and like a lot of people I can say I get a variety of symptoms close to it but also like a lot of people I find all sorts of descriptions that just end up confusing me.
Sorry to go on but this is the problems I now face, I’m getting to the end of my tether and can’t keep fighting much longer as I am mentally and physically worn out and worried as hell.

dreamdaisy

Firstly, I am thinking of you, which I know does bugger all in the practical sense, but at least you know I care.

Secondly, I am glad you are going to a rheumatologist. List everything as you have done on your post, and include the psychological feelings too, they are part of the whole picture. Don't omit or hide anything, he needs to know it all. Please try not to do the typical 'male' reaction to illness. You are a human being, a person who is in pain and struggling on all fronts. That's the bit that matters. Your gender is irrelevant. Big strong boys cry - it's the feeble, weak ones that don't. The emotional response that is needed is release, and believe me, it does make you feel better.

When is the appointment? Soon? Oh I hope so. Detail your history too, that is an important point. It's all part and parcel of what is going on with you.

Thirdly, hang on in there. We're here for you, we'll do what we can. DD

minky67

Hi Mell, Im so sorry to read about your troubles.
I have Fibromyaglia. It is dx by a trigger point test & they push on the trigger areas & the pain caused gives them the dx of Fibro.
This might be a bit long but the best way to describe the symptoms for you.
Fibromyalgia is a chronic condition Of widespread pain & Fatigue.
The pain can be felt as burning,aching,Fatigue ranges from feeling tired,to the exhaustion of a flu like illness.
It can be more painful than RA.
Other symptoms include; Unrefreshed sleep; waking up tired & stiff.
Headaches ranging from normal to migraines.
irritable bowel; frequent diarrhoea or constipation accompanied by gas or nausea.
lack of concentration & word mix up.
clumsiness & dizziness.
sensitivity to changes in weather & to noise.Bright lights,smoke & other environmental factors.
Allergies.
Depression & anxiety have been linked to it as well.
I suffer from most of these symptoms & the muscle stiffness plus the OA i have affects my mobility terribly.It can also make tendons & ligaments painful too. My Plantar Fasciitis is linked to Fibro.
I hope this has helped & i hope you dont have this condition. It affects every part of my life & is B....y painful.
debs

annie_mial

Mell, I will echo DD - let the doc have the lot! There is no point in hiding pain or feelings, you will not get the results you need (and I'm a fine one to talk, my invariable reply to 'how are you' is 'fine' even if I am crawling on hands and knees!)

Sorry you are so hassled by it all including work, just hang in there.

Love
Annie

dreamdaisy

Oh minky, what a load of trouble you face. Sending you lots of thoughts and good wishes, Dreamdaisy.

minky67

Thanks DD, Just have to try & get on with things dont you.
debs

tillytop

Hi Mel, I so hope you don't have Fibrolmyalgia on top of everything else, and I hope that your appointment is SOON so that you can tell someone what's going on and hopefully get some help. From what you say your GP can see how unwell you are and I reckon it's his/her job to communicate with the other specialists in such a way that they understand too. I know myself how desperate it feels when you are so unwell and feels that no-one is listening/believes you. To my mind the GP really should be the key link in the chain but I know from experience that, often, this is the not the case.

Thinking of you. Love Tilly xxx

maud48

Hi Mel
I'm sorry things are so difficult for you and hope when you see the rheumy things will improve.
I was very recently diagnosed with fibromyalgia so don't know a lot about it. I also have OA so had to have lots of tests to find out what exactly I had.
My main problem is pain everywhere, not just in joints, and extreme fatigue which can last for days when I do anything the slightest bit strenuous.
I was beginning to think it was all in my head, especially as the pain moves around, and was relieved to get a diagnosis.
The rheumy asked about my history and then pressed me in various places to see if it hurt; when I'd peeled myself off the ceiling he told me I had fiybromyalgia.
It's a horrible thing to have and I hope you haven't got it as well as everything else but it is best to know.
Another thing I've learned it that it's a very newly recognised condition and a lot of people and even some doctors don't accept that it exists. Fortunately I've got a very good one and hope you have too.
Let us know how you get on,
maudxx

frogmorton

Hi Mell##as you know I have worried about what happens with you for ages.


When is the rheumy apt?

I suggest that you write it all down succinctly and as concisely as you can so taht you can say everything you need to.

he will ahve questions too and take your wife with you - her backing will be invaluable - she can see what you got through.

He/she will ahve their own questions and test to do/ask and I am sure you wont be dismissed this time Mell.

Love


Toni xx

puffin

Hi everybody,

Debs gave an excellent summary of the main fibro symptoms.

If the moderaters do not mind, I would like to recommend two excellent books. ( I have no connection whatsoever to them other than referring to them from time to time over many years. I have had fibro. for twenty three years but got the official diagnosis under twenty years ago.)

They are not cheap but considering we have chronic conditions and have to live the rest of our lives with them, then imagine the benefit of the information spread over time to justify the outlay.

The first is called 'Fibromyalgia and Chronic Myofascial Pain----A Survival Manual', Second Edition (there may be a third now) by Devin Starlanyl and Mary Ellen Copeland, published by New Harbinger Publications, Inc. ISBN 1-57224-238-8

This is a very big, limpback, comprehensive book, almost A4 size ---there are twenty -eight chapters on every aspect imaginable, including medication, sleep and fatigue, crisis management, nutrition, 'bodywork: regaining function', 'wellness recovery action
planning', at work and at home: making your life easier', to name a few.

The second is 'The Fibromyalgia Survivor' by Mark Pellegrino, M.D., published by Anadem Publishing. ISBN 0-9646891-2-X.
He is an American doctor, now recognised as an authority on fibro., who has had the condition himself from childhood.

This I have found very helpful too, particularly the chapter which has this format,

'Where is the pain/flare up? (body part)

Conditions that can cause the pain may be related to or possibly related to fibro., or may be unrelated to fibro.

Causes of this particular flare up

Treatments to do on your to resolve flare up

Doctor strategies to resolve flare up.'

There are very helpful diagrams. In the early days with so many symptoms, some extremely alarming, visits to the GP involved reporting different sites of pain. Later, with this book ( plus the experience of time) I was able to check a symptom and decide whether to make an appointment or not that week. Having said that, I still got ( and still do) very upset and frustrated if I tried several strategies and no relief followed! Reassuing is the list of symptoms which are not related to fibro. and which must be checked by GP.

There are no funds for this idea

---

giving newly diagnosed patients copies of these books or similar after diagnosis!
You buy a new something or other and are given a manual. You acquire a chronic health condition. Why not give advice on reading material (officially sanctioned of course) with the reminder that nothing replaces a consultation and that these provide background information and advice. You do get leaflets on Fibro., like the ones on diabetes, heart conditions, etc. but they tend to sit in the racks in a surgery. I have not seen one recently but it is possible the above books are listed in the recommended reading matter.

Try 'googling' these books to read reviews and learn current cost.

I am sorry this post is so long. Having read this far you may need a stagger around your chair/a lie down/ a cup of coffee/ a cup of tea/ medication, but I hope it has helped.

Am sorry I cannot reply to the very many posts I would like to respond to each day.

Puffin

skezier

Hi Puffin,

Thank You for that info I don't know as I have it or not cus well I interrupted the rumo and said if he was about to tell me I did have fibro could we leave it in the air.... he said we would talk about my feet instead so recon I got the answer.

None of us can answer all the posts but it is nice to see you and I hope your ok? A ((( ))) and again thanks so much. Cris x

bubbles

Hi Mell

A lot of good information here to read through, from our esteemed friends on the forum

I have OA, Fybromyalgia, nerve impingements (cervical), lumbar pain and peripheral neuropathy, not to mention a chronic heart condition. The rheummy has recently said Fybro and OA, but is waiting for full results of tests, next week, so there may be more to add to the list :roll: :roll:

For me, the pain grinds you down, leaving you with depression and or anxiety, fatigue that hits you like a train, you can be ok one minute and the next you simply cannot move or do anything, that happens when I am out, or at home and does not seem to be triggered by anything in particular. Muscles are on fire, legs, knees, shoulders, back, fingers.

Fatigue in intself is depressing, sometimes you are so tired you cannot sleep, you are just like a zombie, then, it can pass for a while. You have to rest, even if you don't sleep, just resting your bones and getting as comfortable as possible, does help a bit, usually in bed.

The Drs are starting Pregablin soon, having increased my amytriptiline to double the dose, which seems to do little good, but, can work well for some people. Pregablin seems to be the drug of choice, but there is also gabapentin.

It has taken a long while to get to this stage of actual diagnosis, but, now I am under the rheummy, I hope they can give conservative management and keep things on a more even keel.

Take care XXXX Bubbles

mellman01

Thanks so much all, in reality I am clutching at straws really just trying to understand what the hell is my problem, anyway if I can't get any answers to confirm I am in the pain I am then I'm sunk, I guess I could be out of work by crinbo.
I'm just tired of it all really I wish they would just get on with it then I would know where I stand, as it goes it's like sitting on death row.

skezier

Hi Mel,

A ((((( ))))) and you know its actually just as likely to be from your neck..... Mine does that as well BUT they hep it big time so hold on to that and well fingers crossed you can get early retirement if need be. Another ((( ))) and try not to wind your self up too much. Luv Cris x

frogmorton

mellman01 wrote:

Thanks so much all, in reality I am clutching at straws really just trying to understand what the hell is my problem, anyway if I can't get any answers to confirm I am in the pain I am then I'm sunk, I guess I could be out of work by crinbo.
I'm just tired of it all really I wish they would just get on with it then I would know where I stand, as it goes it's like sitting on death row.

Hi Mell

You're not clutching at straws. You are desperately trying to find out what is wrong. Do you ahve a date for the rhuemy?

Sooner the better. Once you knwo what it is...you will feel better - better the devil you know and all that.

You take care

Love

Toni xx

barbara12

Hi Mell
Sorry I have only just seen this , I do hope you get some answers when you see your rheumy, I think not knowing can cause us to worry more.
I am waiting for my first rheumy appointment,and I am listing everything in my little book, otherwise I go blank.
You take care and let us know how you get on.
Barbara

dreamdaisy

Thinking of you mellman. Not at my best today, but can spare some thought for you and a few others. DD

mellman01

Hi all thank you for keep giving me all the info and support your a good bunch!, I only have a few more things to ask you all.

How painful is it when the press on the 18 points of the body?, does it make you jump up in the air screaming or is it just noticably painful to the point of being quite unpleasent?.

Now the pain in my neck and shoulders althought really really unplesant is what I would call a typicle type of pain, it effects me by giving me bad head aches stifness burning feeling in the shoulders that is highly unpleasent and painful to the touch it can make my neck and reas red and hot when it's bad, it also give me bad tinitus when it's active, I also get slightly numb finger tips and tingling in my little fingers some times, but it does however respond to pain killers most of the time all be it not for long, now the flare pain I get in my knees and lower legs is totally diferent in the way it feels, trying to explain it is not easy as it is very unpleasent and creeps in , anyway it doesn't really respond to pain killers and rest is the best form of treatment.

Is this difference common with this illness??.

dreamdaisy

When they assess inflammation levels etc by pressure it depends on how bad things are and how you react to pain. Some would be writhing, others would ask 'Are you pressing yet?' EVERYONE is different in how pain affects them and in how they feel it. There are considerably more than 18 points too.

My pain is like sharp, stabbing, hot needles racing thro joints, especially in my ankles and sacro-iliacs. I describe it as sharp tooth-ache, pain that hurts but you cannot rub better. Walking is like standing on razor blades. When things are calmer on the Western Front it's just a deep-seated, dull throbbing ache from top to toe. Pain has been continuous since 1997. I no longer wish for pain-free days, because it will only start again and I don't need that. I'd rather have it controlled and steady.

Only you can determine how you cope with it. Give in or fight - that's the stark choice.

Right, it's Thursday, off on my razor blades and stabilisers to wrestle with the black bin. Hoo-bloody-rah. DD

minky67

Hi Mell, Im hoping your feeling better today.
The pressure point test in my case was; they applied pressure to the main points & i winced & oh d with the pain. (did feel like hitting the ceiling on some points)
I get burning,throbbing & stabbing pains in my neck,shoulders & knees. My muscles are always sore, stiff & i feel like ive just run a mile.
I always feel like im plugged into the mains, the shoulders( middle of back) are always tingling & it gets quite painful,my muscles there are as hard as rock & always red hot to the touch.
I sometimes feel like im being stabbed & shout out in pain.
The fatigue can hit you anytime with no warning.
The right medication can help but im never painfree. Im having acupuncture ATM but its too earlier to say if its helping. My next treatment is injections under x-ray into my neck. :roll:
Along with this i have OA, cervical & lumber spondylosis,prolapse disc at L4/L5,IBS, high blood pressure(i wonder why :roll: )Tenosinovitis in my wrists & plantar Fasciitis in my feet.
Just bring it on ay. :roll:
I really hope you havent got Fibromyalgia as its a painful condition with many things all linked to it.
debs

minky67

Just bumping this up for vikki
Hope it helps.
debs