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The UKFibromyalgia Forums • View topic - Have I really got this?????



Have I really got this?????

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Have I really got this?????

Postby loobylu » Mon Oct 13, 2014 11:00 am

Morning all. I am new to this but really need all your advice as I am not sure I have fibromyalgia (having trouble accepting it).

My story began about 2 years ago when I woke with a really painful knee. I don't know how this happened but it resulted in me having a long time off work. I have a really physical job and had serious problems walking, bending etc. After 6 months of intense physiotherapy, I had surgery but the surgeon could not find a cause to my pain. I carried on with physio for a further 4 months and was told that I have a muscle imbalance. By this time my other leg started to hurt as well but I just thought this was due to compensating for my bad knee.

After an MRI on my knee which showed absolutely nothing I was referred to a rheumatologist. This is the part that blew my head. The consultant took my complete history as follows:
TMJ
Restless legs
Feeling tired constantly
Lack of concentration
Frequent night time visits to the loo
Acid reflux
A recent weakness in both wrist
A sibling with lupus + RA
After a physical examination where she pressed on different parts of my body (bits where I never knew hurt) she diagnosed fibromyalgia.
I had never even heard this word before!! She prescribed amitriptyline, arranged a follow up appointment (10 months later) and sent me on my way.

I returned back to fulltime work, took the tablets and tried to put everything to the back of my mind. Two months later, BANG, OMG the pain had me in tears and pulling my hair out. My thighs and calf muscles were in spasm, pains in my wrists and hands and a strange red rash over my chest and upper arm. I saw my GP who said I was having a flare-up, prescribe pregabalin, naproxen, lanzoprazole and signed me off sick from work. These symptoms lasted about 6 weeks and resulted in me handing in my notice at work ( as they were not at all sympathetic and were causing me more stress). I have since started a new job but only on a bank contract so I can pick and choose when I work. I have been averaging about 20 hours a week which I need to do financially. My new employers have no idea of my diagnosis.

The medication seemed to be working well for about 6 months, but now the restless legs, TMJ and the frequent weeing has returned with vengeance. The main problem is my legs. They feel so stiff and heavy, sometimes so heavy I have trouble lifting my feet. The deep, bruised feeling in my thigh muscles is constant and relentless. I seem to walk ok but then all of a sudden my legs go to complete jelly. I get sharp stabbing pains in the soles of my feet as if I'm walking on broken glass. Weakness in my wrist and stiff fingers. It feels as if my hands are really swollen but they are not. I have gone from a size 12 to a size 16 although my diet has not changed. 2 weeks ago, I was also diagnosed with recurrent corneal erosion and have to apply drops frequently to stop my eye from drying out.

So for now my rheumatology appointment is coming up and I need the advice of you lovely people. I am not convinced I have FMS and don't whether to challenge the consultant or just give in to her diagnosis. Yes some of my symptoms sound like FM but I believe many are absent. I don't have depression, headaches, painful period pains. I think I have a high pain threshold (sometimes I have nasty bruises but don't know how they happen, however, my spacial awareness is rubbish). Is my forgetfulness in general and for words really fibrofog or just age-related (I'm 42). I have recently been told that my sibling with lupus + RA was originally diagnosed with fibromyalgia.

I apologise that this post is extremely long and I thank you for reading it this far but I would really appreciate your thoughts on my diagnosis. Am I just in complete denial ?
Last edited by FluppyPuffy on Mon Oct 13, 2014 11:37 am, edited 1 time in total.
Reason: Split into smaller, clearer paragraphs for easier reading.
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Re: Have I really got this?????

Postby Hellyn » Mon Oct 13, 2014 11:16 am

hello, you have the right to ask for a second opinion...or be referred to a pain clinic and see a specialist in fibro. Denial? maybe but we who have it are relieved when a diagnosis is made. It is a complex condition and it is very individual.

I empathise with you as many here will.

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Re: Have I really got this?????

Postby LizzyMac » Mon Oct 13, 2014 11:16 am

It sounds like a lot of the symptoms I have, so I'd trust your doc on this. I suppose it's possible that you've been misdiagnosed, but I'd at least give some of the things that are known to help fibro patients a try and see if you get some relief. I get the pain in my feet that feels like I'm walking on broken glass too. I walk with a stick often more for balance than anything, because when the pain hits, sometimes my joints will just say NO and my joints buckle. (stairs make it 100x worse)

I was on amitriptyline for a while, but stopped taking it because it made me gain so much weight. (I probably went up 3 stone in half a year? It was crazy.) Diabetes runs in my family (brother has it) and I also have insulin resistance, so I felt the weight gain was dangerous. But something you said also reminded me... while I was taking it, I tried going to contact lenses and it was HORRIBLE because my eyes were so so so dry. My mouth and skin were also dry when I was taking amitriptyline. Once I quit taking it, my eyes, mouth, skin, etc, returned to normal. So that could be to blame for your eye problem. It might be worth asking about, because dehydration is one of the most common side effects of amitriptyline.

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Re: Have I really got this?????

Postby dazzleship » Mon Oct 13, 2014 11:23 am

hi welcome to the forum.

I don't like to say things for definite cos I don't know for sure, but one thing I will say is that a lot of the symptoms you have listed I can identify with. i was diagnosed with Fibromyalgia just over 2 years ago after suffering random pains all over my body. the GP thought it was Fibro but sent me to a rhumatologist who did like what you had - pressed loads of points that almost sent me through the roof! he then said it was Fibro.

the 'heavy legs' sensation you describe - I have suffered that. it's what led me to start using crutches to walk anywhere outside (at work, out shopping, etc) because I just couldn't walk properly anymore.

I can't say for sure if you have Fibro - as I'm sure more knowledgeable people on here will tell you, there are other illnesses which are similar symptoms. but just because you don't have all the symptoms doesn't mean you don't have fibro as it affects us all in different ways. (does that make sense?)

denial I know all about. it's hard to come to terms with something that has such a profound effect on your life. I'm still coming to terms with it two years on.

as for your upcoming rhumatology appointment - my personal opinion is that by all means challenge the diagnosis - ask him/her if it really is Fibro, maybe take a list of your symptoms as it's easier to remember them that way. there's nothing wrong with wanting to find out for sure what is affecting you.

good luck. :hugs:
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Re: Have I really got this?????

Postby soretro » Mon Oct 13, 2014 11:25 am

Pregabalin (lyrica) is notorious for weight gain - it seems to slow down the metabolism, increase appetite.
It is one of the most well-known, and least-liked side effects of the drug. :-(
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Re: Have I really got this?????

Postby vivs » Mon Oct 13, 2014 11:35 am

Hi there,
I am also new to this site so bear with me. I can totally empathize with this. My diagnosis came about a year ago and only after 10 years of pushing for an answer, so it was a bit of a relief. I found it very hard to accept when finally told but the more I read the forums and other sites the more the symptoms made sense. I don't think I have it really badly as I know a lot of people a lot worse off than me. What is really helpful is being able to say yes I feel like that sometimes and know that it is the fibro and not another thing wrong. If all else has been ruled out then it sounds as if it could be FM. The only thing I take is amitriptyline and esomesaprazole, so have managed to stay off the pain killers, I do have acupuncture for the headaches with works most of the time but not always.
I hope you get some answers soon and can then move forward in dealing with it.

Vivienne. xx
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Re: Have I really got this?????

Postby Paisleyjane » Mon Oct 13, 2014 12:00 pm

Hi, i can sympathise with you.
I was given this as possible diagnosis 2 years ago. I was a nurse and found it hard as I had to retire. I have been to pain clinic this week and now all the trigger points are really painful, where before only some were. I could have cried. Silly I know, I guess it is always hard. Don't beat yourself up. Life changing diagnoses are so hard, do you have anyone you can talk to?
If you had trauma related illness or Parkinson's or MS you wouldn't feel like this. I think it's because they are better known and people understand the implications of having them. We need to hope that generally Fibro is soon accepted the same way. Take carex
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Re: Have I really got this?????

Postby FluppyPuffy » Mon Oct 13, 2014 12:08 pm

:welcome: to our little FibroFamily loobylu :cow-wave: :cow-wave:

I've moved you into here with this being your intro topic as it's a more suitable board. I've also done a bit of tweaking to your post to make paragraphs a little clearer and easier to read. One of the delights FM forces on some of us is problems when reading longer posts, making us get lost and reading the same bit again and again. The smaller paragraphs gives us a better chance of getting all the way thru it and hopefully being able to offer some helpful advice to you.

If you feel that you may have been given a wrong dx then you have the right to question it and ask for a second opinion if necessary. If you think this may be the case for you, the best thing to do is prepare some info why you feel an FM dx may be not the right one. Go thru all your symptoms and problems, hi~lighting the things you feel may not be related and why you think this may be the case. Then, when you go for your next Rheumy appt, take this with you, and ideally a 2nd copy to give to your Rheumy so that you can go thru things and see what they think.

Altho there are many, many symptoms, problems and other associated issues and conditions that can be attributed to FM, it doesn't mean that everyone will or must suffer/experience them. FM is a very complex and individual condition, and whereas on paper the symptoms and things we share makes it seem like we all experience the same problems, when you look at individuals, you find that each shared symptom will be experienced very differently by each of us. So, whilst you don't have some of the related issues, that doesn't necessarily mean that the FM dx you were given is the wrong one. Do speak to your Rheumy and/or GP about your thoughts and concerns tho, and hopefully they will be able to give you some answers that bring you a little peace of mind about things :fingerscrossed: :fingerscrossed: :fingerscrossed:

Weight gain can be attributed to some of the meds used in managing FM. Also, you said that your previous job was very physical. As FM affects our capabilities and limits in all areas, it could be that, whilst your diet may not have changed, due to changes in activity levels, you may not be as active as you were preFM, which could also be a contributing factor to weight gain. Sometimes a review of what you eat, portion sizes, amounts of carbs, protein comsumed etc can help if you are wanting to look at the weight~loss side of things. Also, the meds we take can also contribute to the dry~eye problem. This is something that has started to affect me recently and I now need to use drops several times daily to try and combat it.

Accepting that FM is part of your life can be difficult and take a while to get to the point where you can acknowledge you are ready to start living life with it instead of battling with it. There's no time frame unfortunately, it needs as long as it needs, and if you try to take a short cut, unfortunately it does tend to come back and bite you in the backside :facepalm: :facepalm: :facepalm: Maybe have a bit of a looky around the boards and a read at some of the topics and posts to see how others have found their way thru this stage you are currently juggling with.

Anything else that you want to know about, just ask and we'll try and help you with it :cow-wave: :cow-wave: :cow-wave:


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Re: Have I really got this?????

Postby Jeany » Mon Oct 13, 2014 12:37 pm

I read your post with interest due to the fact that you suffer from stomach problems. Please see below a post I added recently.


In brief I was diagnosed with CFS/ME and Fibro 3 yrs ago. Prior to this I had suffered REALLY bad acid reflux,IBS & stomach ulcers, which flare up at regular intervals and make me feel ill in every way.... some symptoms are very similar to that of ME/CFS and Fibro.

The stomach problems has been going on for approx 9 yrs now, and because I am having yet another flare with this, and my throat is raw and the inside of my head,ears and eyes feel like they have been washed with the acid from my stomach I have been doing a bit of research.

I have just downloaded a book to my Kindle called :_

Why Stomach Acid Is Good for You: Natural Relief from Heartburn, Indigestion, Reflux and Gerd by Jonathan Wright.

It seems that he and a lot of others who have done research on this believe that taking anti acids, and prescribed drugs such as Omprazole & Ranitidine are actually making matters worse, AND could indeed be causing other illnesses, because the digestive system needs acid so that nutrients can be absorbed and so by taking meds to dry up stomach acid you are starving your body of essential vitamins & nutrients that feed muscles,bones and all internal organs. Basically these meds are knocking our systems completely out of balance.

I know a lot of people with fibro also have stomach problems, so wonder if this could be the case and in fact I have discussed the relation of my stomach & other health issues with my family for years, so I do believe this.

I have only just started to read this book, so I cannot tell you any more at this point, but I am going to give the suggestions a go.

I hope this helps some of you who use this site.

This book is quite complex, but makes complete sense. Another book which I am reading now is Healthy Gut Guide by Jill Thomas.

The problem is that GPs do not have time to actually find out what is causing the problem,so they through medication at you to relieve the symptoms.
I am so worried that I am going to develop cancer due the the years of stomach acid burning my stomach,osophogus etc.

My next step may have to be Naturopathy,as they seem to delve into every area,and have the time to do so.

Let me know what you think.
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Re: Have I really got this?????

Postby pepperpig22 » Mon Oct 13, 2014 12:51 pm

I was diagnosed 13 years ago after the birth of my son who weighed 10ib 5oz, it was really bad until 4 years ago when I started to work for one hour per day I then went to work full time. it was always there but knew when I needed to rest. in April this year I was attacked at work, 6 weeks of with fractured ribs. I went back in may until the end of July and really struggled, I knew I was heading for a flare up but chose to ignore it.

after my 4 weeks annual leave I tried to get my mind set to go back but boom, it didn't happen. in a big flare up, the worst I have ever had and pain is worse in my arms and legs and new pain in my fingers and toes. on zomorph and bus Copan now instead of tramadol ami etc too many to list. I try to stay positive, am off work have been since the beginning of sept and don't know if I will return, but would like to feel like a lot of ppl with fibro like giving in.

it is hard to deal with, especially in the cold weather. my ribs are healed but I have a lot of pain there now ie cold weather. we all try to comfort each other there are support groups online fibromyalgia private group that only ppl with this condition can see and everyone is really nice xx hope this helps in some way xx
Last edited by FluppyPuffy on Mon Oct 13, 2014 1:03 pm, edited 1 time in total.
Reason: Grammar, punctuation and splitting into smaller paragraphs for easier reading.
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Re: Have I really got this?????

Postby migrembe » Mon Oct 13, 2014 2:47 pm

I think i may have all the symptoms that everyone as and i think that we begin with the pain, fatigue, insomnia and depression and then we chuck in a load of pills which then give us side effects making us more unable to function and the cycle just continues.

However if you have a sibling with lupus you should ask if they could test you for it, it will show up in a blood test as an abnormal inflammation markers, to begin with and then there are more specific tests.

Beverley x
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Re: Have I really got this?????

Postby Acei » Mon Oct 13, 2014 2:57 pm

I thought I contributed to this thread earlier, but obviously didn't press the submit button. I wouldn't mind, but I having what I'd consider a pretty good day.

I don't think any of us can be 100% sure that we have Fibro given that there is no definitive test. The diagnosis comes from having a set of symptoms and the elimination of all other obvious causes. If a widely accepted test is ever developed, I wonder how many of us will be told that we don't have it? That will be fun and games.

With regard to digestive problems. I too have reflux and bloating problems that surfaced with Fibro which I consider part of the package. I'm on 40g of Nexium daily otherwise I get very bad heartburn. I've had a scope and have a hiatus hernia which isn't unusual. However, I reckon this isn't he primary cause of the digestive issues. It's said that Fibro effects the digestive enzymes in the stomach leading to problems. It seems to effect everywhere else so assuming that it can impact the stomach seems reasonable.

I too have found Pregabalin to cause considerable weight gain. I've been on it for 3 years and have reduced from 175mg per day to 25mg per day and will come off it completely shortly. I don't think it was doing anything for me bar the weight gain. However, my weight has yet to come back down. Hopefully I see some results when I come off it completely.
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Re: Have I really got this?????

Postby loobylu » Mon Oct 13, 2014 3:37 pm

Thank you all for the replies.
I know after this appointment I will be discharged and the thought of living my life without any support is very daunting.
I know some of you have spent many painful year without a diagnosis and I should be extremely grateful my diagnosis was given in 1 year.
However, would the rheumatologist diagnose fibromyalgia just to give me a label (the easy option)?
Are the symptoms of multiple sclerosis similar to this?
And why do my legs constantly feel like I've run a marathon?
Thank you once again for replying. I don't feel so isolated now xx
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Re: Have I really got this?????

Postby *Lisa* » Mon Oct 13, 2014 4:12 pm

Hi,

Im sure most of us doubted fibro as some point.

I did, i thought of many things that it could be instead then finally excepted the diagnoses.

10 years on from diagnoses (15yrs of symptoms)i saw the Rhuematologist for CFS formal diagnoses and would you believe he now thinks i may just have been mis diagnosed and actually may have Ankylosing spondylitis :shock: this came about as i persistantly have a high CRP (inflammation) level which was always dismissed by my GP!

Looking and researching a lot of illnesses/conditions do not rear there head so to speak for many many years. MS/Lupus and Ankylosing spondylitis amoungst some of them may not show up on tests for years! also alot of conditons like those have so many symptoms that piecing the puzzle together can also consume alot of time.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Have I really got this?????

Postby madchickenlady » Mon Oct 13, 2014 4:55 pm

I would ask about the tests they have done so far, have they ruled out Lupus and MS before diagnosing you,they are only supposed to diagnose Fibro if all the tests come back within normal range, so any blood test that shows marked raised inflammation levels should be investigated further I would ask when you go for your appointment to make sure they have tested you properly
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