I actually don't think I have Fibromyalgia

All your fibromyalgia experiences, questions and answers.

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Re: I actually don't think I have Fibromyalgia

Postby cameron1 » Mon May 06, 2013 10:50 am

Hi

I too was quite shocked when I came on this forum about the severity of which some people suffer with this condition.

Yes, I have bad flare ups. I'm currently having one and have been off work for 8 weeks. But prior to this, I had not been off work for a whole year.

For the most part, I work 30 hours per week, I have two small children, I keep my house spotless, and was even considering doing an open university degree as well.

Yes, the symptoms are there daily, and its not nice. But I have learned to manage them and live as normal life as possible. I cannot burn the candle at both ends so to speak. A night out will leave me wiped out and aching for several days. I have to listen to my body and know my limits which can be frustrating. I have to take good care of my body, eat well, lots of rest etc. I always have pain in my back, pins and needles, and fatigue. But the other symptoms fluctuate depending on life at the time, and also the weather. The cold weather really aggravates my condition.

My advice, if it is fibro. Just be grateful that like me, we are still able to maintain some sort of normality most of the time. The day may come when that's not the case.

But you are entitled to challenge the diagnosis and push for further investigation if you think the root cause lays somewhere else. xx
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Re: I actually don't think I have Fibromyalgia

Postby Picklepudding » Mon May 06, 2013 11:29 am

We took the kids to play crazy golf yesterday. Nice and relaxing stroll around 36 holes. But my goodness is my foot and ankle paying for it now! I've just hobbled around Sainsburys using the trolley for support!!!

I've started the vitamin d and calcium supplements again, just in case. I will certainly be asking if that's one of the tests that was done and if not, I will ask for it to be done.

I'm just getting so worried about my holiday! I don't want to have to resort to a wheelchair but if 36 holes of crazy golf hurts like this, what on earth is hours of walking around Disney Workd going to do to me?!?!! But I WILL NOT let this ruin my holiday!

I'm still not convinced about the fibromyalgia preliminary diagnosis, but we shall see!
X
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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Re: I actually don't think I have Fibromyalgia

Postby SchroedingersCat » Mon May 06, 2013 4:15 pm

Pickle, I work full time too (37/5 hours), and I have an allotment, a largish house and garden, I help run an event club at weekends, I have a very active dog and 3 cats....I'm a very busy person. Some days I can barely do anything more than commute to work, do the job, and come home, other days I can get tonnes done. I pay for overdoing it though. My pain is mostly left hip, left lower back, left leg down the side almost to my ankle, right elbow (which is agony if someone knocks it), and mild pains in my forearms. I get pain elsewhere too from time to time, but those are the main ones. I also have patches of over-sensitive skin that come and go. Anyone who met me now would think I'm normal, anyone who has known me for years knows I have slowed down a lot over the last few years. So yes, I'd say you could have fibro, but like me, you're lucky and only have it in a mild form. I don't have any other physical illnesses or conditions, the brain fog is minimal, and I've no depression etc.
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Re: I actually don't think I have Fibromyalgia

Postby Picklepudding » Mon May 06, 2013 5:18 pm

Oh my goodness, I'm so tired today. I can hardly keep my eyes open :o(
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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Re: I actually don't think I have Fibromyalgia

Postby Picklepudding » Thu Jun 06, 2013 6:37 am

Hi Cocobella

After reading your comment about a vitamin d level of 30 being close to osteoporosis, I'm a bit worried now as mine came back at 28! I'm seeing the GP in a couple of weeks so hopefully he'll get me started on something to get my levels back up x
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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Re: I actually don't think I have Fibromyalgia

Postby Sophiex » Thu Jun 06, 2013 9:47 am

Hi Pickle,

I noticed in your signature that you have Crohn's and Psoriasis, both conditions are associated with types of inflammatory arthritis - Crohn's is often related with enthesitis (sp?) inflammatory arthritis and Psoriasis - psoriatic arthritis. I was fobbed off with a diagnosis of Fibro when I had Rheumatoid Arthritis and within a few months, I got joint damage. Now, it turns out I have both conditions but the general Fibro symptoms were focused on and they ignored classic inflammatory arthritis symptoms in me. Given your history of 2 autoimmune diseases that often go hand-in-hand with arthritis, I'd push the rheumy a bit harder. I had an isotope bone scan which will show inflammation in joints if there is any. Might be worth asking for one?

All the best of luck!

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Re: I actually don't think I have Fibromyalgia

Postby MichelleJ » Thu Jun 06, 2013 9:45 pm

Hi pickle pudding, definitely push for further investigation. But you do sound to have fibro symptoms. For me I was still working as a area sales manager for Avon at the time I was diagnosed and had an managed this for a fair few months after my first initial flare. However, I believe I've actually had this since the age of 5 looking back as I don't ever remember not having unexplained pains, tiredness, odd symptoms. So for 30 yrs I functioned normally then got by for a few months working wen it really became an issue. I was diagnosed at age 35 3 yrs ago. But in the past 3 yrs things have gotten gradually worse, I had to give up work but was coping at home, then my mobility decreased and I started finding things harder. I now need help with nearly everything, have a paid carer, and need a wheelchair to go anywhere. On a bad day even going to the loo or eating feels impossible due to pain and fatigue.

What I'm trying to say is I suspect its a mild case like I feel I lived with for years pre diagnosis. I knew something wasn't right for years but it never quite sat right with these illnesses. I also have m.e. this is what I felt I might have for years but again I just didn't seem bad enough, like you are saying. A lot of people do manage to lead normal lives with fibro if they have a mild to moderate case of it and the websites back that up in their evidence. I think maybe its likely that the amount of people on here in the different severity brackets doesn't reflect the actual percentages if that makes sense. I think maybe more people who are severely affected come onto a support forum than those who are carrying on fairly normally. I know I never joined till I got bad. Sorry if I've waffled, my brains not quite in gear today lol
Dx with fibromyalgia m.e/Cfs and asthma
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Re: I actually don't think I have Fibromyalgia

Postby Diane64 » Thu Jun 06, 2013 11:05 pm

Hi, everybody that suffers fibro suffer differently, every day differs from the last with me, i still work full time (shift work) still manage high impact excersicing and have 2 two year old grand kids, im not saying its easy but i dont suffer full blown fibro, i do worry though that my ailments and symptoms will get worse, but for now i take every day as it comes, as much as i would sometimes just want to crawl into my bed for the day , for one my body gets too sore lying so i cant and 2 i wont lie down and give up even if that means suffering for it.

My medication keeps me semi okay and i just get on with it as best i can..i acknowledge that i do have fibro but i dont let it rule my life..
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Re: I actually don't think I have Fibromyalgia

Postby Mrsscowie » Tue Jun 11, 2013 9:03 pm

I have had various symptoms for a while now but for the last 2 weeks I have been able to come off the amitryptiline and diclofenac because I haven't had as much pain. Most of it has gone or is just slightly sore. Now I am thinking I can't have fibro. Can anyone advise please? Thank you x :-)
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I actually don't think I have Fibromyalgia

Postby pinky1 » Tue Jun 11, 2013 11:56 pm

Hi pickle,
I don't work but I'm a single full time mummy. When I was first diagnosed last August (although I suspect FIbro started very, very mildly before I had my daughter) I wasn't convinced. I also had doubts because of the severity of pain etc that some members have here.
But I would say now that I do believe I have fibro, my symptoms haven't worsened to the point that I can't get out of bed, thankfully as I have no choice really. But they have worsened. At the beginning I said no meds at all, one month later I started on co-codamol. A couple of months later I needed diazepam for spams and tightness in my muscle and the weird jerks. This week I have just started Celebrex.
My pain is constant and wide spread but I would probably class it as moderate. I can't do as much as I used to but I'm not at the point where I can't leave the house.
Like everyone says fibro symptoms are so different for everyone. I too worry about the future but try not to dwell on it and try to remain thankful that I have working limbs, the ability to get out of bed in the morning etc.
All the best :-)
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Re: I actually don't think I have Fibromyalgia

Postby perseus » Wed Jun 12, 2013 1:59 pm

Many Fibromyalgia symptoms overlap with others, and people who post here may themselves be unrepresentative. Would someone with mild conditions ever get round to obtaining a diagnosis or be too busy working to post?

I worked for ten years with it, and have never tried to claim benefits. I even tried to jog with it (with disastrous consequences) but until recently have walked two miles a day.

The diagnosis should include undue pain in many of the following areas when pressed. My pain has been mainly restricted to the neck and back, but most of the other areas are more sensitive than they should be.

Image

(Just realised my recent back problem could indeed be fibro looking at this)
As a Public Moderator 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. Regards Stephen
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Re: I actually don't think I have Fibromyalgia

Postby mililly » Wed Jun 12, 2013 3:58 pm

Im about to be dx with fybro. I have had pain for the last 3 months. Has been excruciating and better but i suffer every day with it. Neck arms hips legs and feet. Cant sit for long cant walk for long. Catch 22. Im not really bothered what they say it is i just want the pain to go. Its just so debilirating.
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Re: I actually don't think I have Fibromyalgia

Postby Mrsscowie » Sun Aug 04, 2013 10:15 am

Well here's an update. I thought I didn't have fibro cos I was able to stop the painkillers. Two weeks after my last post I had a flare up and had to revisit my GP and take the meds. Also the pain from plantar fasciitis is worse. I think I have learned my lesson :nono:
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Re: I actually don't think I have Fibromyalgia

Postby Kyomii » Wed Aug 07, 2013 9:12 pm

Fibro is diverse and affects each person differently. Like MS, there are different severities of it. I know people with fibro who can lead a relatively normal life, I also know people with MS who can do the same. Then there is the other end of the scale where the severity affects the quality of life considerably.

Additionally many people can and are misdiagnosed as symptoms of things like Lupus, CFS, FMS, MS etc overlap. It can be a long road to get a correct diagnosis. The main symptoms of FMS are widespread pain, hence the tender point test - the severity of the pain is secondary to the diagnosis. If you feel it isn't fibro though then you must press the issue.
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Re: I actually don't think I have Fibromyalgia

Postby PurpleRose » Wed Aug 14, 2013 1:43 pm

Hi,
I have also thought the same as you, thinking well, I can cope I plod on through my day, go to work (35hours a week),
I will go out and do things at weekends, look after my niece (she's 3 so you can imagine, the play and running about involved) I also bake, and from time to time I have orders to do, I cook every night, I clean, everything anyone else would do, so I'm thinking I can do that and so many people on here can't, and my heart goes out to them, so I can't have Fibro, really! But when I think about the after effects of doing these everyday things, do I think it's not normal. I'm 25, not particularly unhealthy, I do like the odd chocolate bar (or 2) but when I start asking questions and people cannot relate, or look at me like I have two heads I realise walking a 15 minute journey into town should not leave me feeling exhausted, waking up in the morning is a chore because I'm still tired and I have to massage my feet because if I get up like anyone else I wince in pain or I fall back onto my bed, or my boyfriend has to roll me onto my side because I physically cannot get from laying down to sitting up. Holding my new baby nephew leaves an ache in my arms for days, or unexplained back pain leg pain, pains in my shoulder blades out of nowhere. The list could go on forever.
This isn't even including the overwhelming stress I feel, the constant feeling of exhaustion, I'm learning this isn't normal, I just thought it was what everyone went through. And I think that's what it is about when you realise what may be normal for you, is not actually normal for the human body at all.

I have recently today learnt a painful lesson, I thought I was fine I didn't have fibro, so I stopped taking my meds, and believe it or not I was fine, moods were great, pain was there but barely noticeable, then POW!! I can't get out of bed this morning so I lay there wriggling for an hour trying to wake everything up, then I walk into town, I'm exhausted and I'm so pleased there is a coffee shop, I have been sitting here for an hour trying to muster up the strength to walk home. Should have known this would happen as on my way down my arms were so heavy and aching it felt like I was carrying 10 shopping bags :/
From what I have learnt this all contributes to fibro amongst other things. So I will be taking my mess religiously again. I'm a great one for testing myself and my body this is obviously one test I haven't won.

I am still waiting on results from blood tests, hoping it won't be long now for more answers, we shall see.

Hope this makes sense and good luck to everyone posting here
Xxx
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