Fibromyalgia Action UK
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Scared to ask

Hello,

I have a doctors appointment in early April to describe something that others have told me could be linked to Fibromyalgia. I have since read the NHS pages about it and I have to admit, I can relate to most of the symptoms.

To give you a little information. I'm female, almost 30 and my health has been degrading over the last few years. I have PCOS, anxiety, depression, disc degeneration on L3/L4 and I also have IBS.

What I wanted to ask here was whether your experiences are similar to mine. I'm really scared to go to the doctors with yet another medical issue. They aren't the best at paying attention. It took them 2 years to diagnose IBS and a lot longer than that to officially diagnose PCOS. I don't have a lot of faith in them. I want to go and suggest that I may potentially have Fibromyalgia but, I obviously don't know myself but if I can skip the months of ruling out other things first that would be good.

So, if I explain what I have regularly going on, would you be able to let me know if it sounds similar at all please?

So, as I said I have IBS. I am absolutely exhausted all the time yet I really struggle to sleep. I need to be almost catatonic before I can actually get to sleep and even then, I wake up several times throughout the night. I still feel like my body is tired though, even when I have slept. I get headaches all the time. This is exactly new for me as I've had them since I was little but the frequency has certainly changed to the point that I have a headache more days than not. This part could be related to my back but I don't know. I get hip pain when I'm walking like it ceases up. My legs in general get very restless and often times, I feel a constant need to stretch my entire body. I also have felt hot for the last five years. I very rarely feel cold. I have slept with a fan on every single night since summer 2013. I just don't seem to have a normal temperature gauge anymore.

The last two are the symptoms that have worried me the most. Firstly, I've noticed on my upper body that if someone pokes me or my dog jumps up and his claws brush against me, even though it doesn't hurt anyone else he does it to, it really hurts me. It doesn't start immediately, it's after a few seconds, I feel the pain get worse and worse to the point where I can scream. It only last a few minutes at the most but it seems like my skin is having an extra painful reaction to something that shouldn't be painful at all. This has been going on for quite some time but with all my other health issues, it was just never a priority to tell the Doctor about. The second worrying symptom has been my mind and my memory. I feel like I've lost the ability to learn. That's the best way I can describe it. It feels like my brain can't learn things that it used to find easy. I've had a lot of short term jobs because when I'm trying to learn the jobs, I get confused and I really can't focus enough to get my head around what I'm meant to be doing. I never told anyone because it sounds silly or that I'm just being lazy. I pay so much attention and I write everything down but sometimes it's like I can't even make sense of what is in front of me.

So with all of that said. I'm not asking people to diagnose me but if you all said that this actually doesn't sounds like Fibromyalgia then at least I could maybe put my mind at rest. One of my Mum's friends told me about it when I mentioned the pain thing on my upper body, without even hearing any of the rest. So, I guess I'm hoping she was just stretching.

Any advice or help would be so greatly appreciated, I'm genuinely scared either way. But to rule at least one thing out would be good.

23 Replies
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There is no harm in you addressing fibromyalgia with your GP however I would urge you to have other conditions ruled out. Fibromyalgia is a very debilitating condition but as you likely know many of the symptoms are shared and it is vital to rule out other illnesses xx

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I'm going to but I know it takes a long time. If I could go in with more of an idea then that would be better.

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Hi, I don’t think there is anyway that you’re going to avoid getting all the other tests done for your symptoms. The minute you go down the road to diagnosis Fibro it starts with tests to rule out all the other conditions that could be giving you your symptoms. It’s only when all the other tests are negative that the diagnoses of Fibro is given.

One thing I can say is that the pain of Fibro is stated to be ‘ for more than three months having had pain on both sides of the body, above and below the waist and in four quadrants ‘ . I know there have been some new Guidlines on diagnosing Fibro, but I think that the pain one still applies.

You are obviously worried that you could have Fibro, so I think there is no escaping all the tests if you want a diagnosis.....sorry.😢😢.

GP. 😊😊

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Ah, so it's like IBS in that regard then, no way to actually diagnose it; it's more of a process of elimination and if that's what is left that's when they diagnose. I didn't realise as I don't know much about it. Thank you. Looks like a very long road ahead then :'(

I guess depending on what comes under the pain guidelines, whether it's any pain at all or just certain things, I've had everything for a lot longer than 3 months. In fact I've had this for years. I'll have to wait and see what my doctor says.

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There are other things to be tested for before you go down the fibromyalgia route. Has your GP tested thyroid function? It’s also possible to have these symptoms with low B12. See if you can have blood testing done for B12, ferritin, folate and VitD.

Hope you get some answers soon.

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Yes I’ve had a lot of blood tests in the last few years for a number of different illnesses I have. My thyroid has been the thing checked most regularly as it’s always one of the things they seem to check first with anything. Also, I only ever tested worryingly low on vitamin D but went on a strong course of tablets for 8 weeks and that has since been fine with regular checks. Folate has always been fine but the other one you mentioned, Ferratin, I’m not sure about that one so I’ll check, it doesn’t ring a bell so maybe I’ve not been checked for that one. Thank you so much.

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Do get the B12 checked too, it’s never done as part of a routine blood test. Although it is a vitamin it is needed in every cell of our bodies, and is vital for nerve function.

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B12 has been checked regularly due to fertility and conceiving tests I have each month. My blood tests don't tend to be just routine, I've had all sorts tested for. Hate it because I'm terrified of needles and I have rubbish veins.

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Hi

Like others have explained the Fibromyalgia diagnosis is one of excluding other possible causes first.

However to answer your question about 2 specific symptoms .. yes - both can be fibro related

Feeling pain from something that should not be painful, it feeling more pain than you should is very common (it's medical name is allodynia)

Also you get cognitive dysfunction (fibro fog) which can affect things like your ability to retain information

Xxx

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The danger with suggesting something to a doctor is that because you've suggested it they might disregard it. Fibromyalgia has specific sensitive pressure points for pain, which are best diagnosed by a rheumatologist. Ask your GP for a referral. Good luck.

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Thank you so much. That is exactly what my doctors are like and precisely why it took longer than it should have to diagnose IBS which they tried to say was nothing for months before even starting any tests.

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Typical of doctors who don't listen!

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Hello,and welcome☺.your symptoms sound very much like what I experience and I was diagnosed with fibromalgia about six years ago,after years of suffering and getting nowhere.I can see where you're coming from with worrying going to the drs as you don't want them thinking you're a hypochondriac,that's how I feel if a new symptom arises,that's why this site has been a godsend.you're amongst good friendly people here,so feel free to vent off or ask if in doubt,best wishes Emma x

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Thank you so much. Everybody’s messages have been so lovely so far and so much appreciated. It’s been hard the last few years just waking up every single day feel sick from one thing or another. I’m feeling better about speaking to a doctor already.

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Oh yes I am experiencing similar thing with memory. I volunteer 1-2 days a week and when someone wants me to do several things I have to say let me do 2 then tell me the next 2 things. 3 is the max that I feel overwhelmed and loose the first peice of information. It is ....🤔?..lost that thought. I have a doctor’s appointment in 2 days and have somethings to discuss with my doctor that could be adding to my symptom list including the brain problems. Oh I forgot to say fibro is a lonely illness that it likes to invite other diseases to the party.

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Well I’ve been gaining illnesses the last few years like they are goin it of fashion, I guess I have room for more. That’s how I feel with information. I absolutely can’t multi task. If I am given new information it pushes other things out of my memory like I can only handle very basic things now. At first I thought it was confidence but I’ve been having therapy for over a year and we’ve discussed he need to see a doctor because they said I seem fully capable of taking in the information. I even went back to a job I’d done before but when I had to do the training again, it all got jumbled that’s when I realised it wasn’t confidence. I’m sorry you’re going through this too.

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I feel the same way. Those patient summaries they give you at check out from seeing your doctor. Well I folded it up and stuck it in my purse 👜 3months ago and just a couple of weeks ago I cleaned out my purse and found that patient summery and saw renal failure added to the diagnosis list. I knew my kidney level was off a little but never thought about renal failure. There are I believe are 4 stages and stage 4 is dialysis. I see my doctor on Thursday to talk about this but I believe I’m in stage1. So no NSIDS (ibuprofen etc). I was on Celebrex but stopped that when my kidney function was first discovered to be off. So I know what you mean. It is getting to the point I don’t know all my diagnosis. I will have to write them down like I had to do with my medications. I’m going to have that conversation with my doctor about checking for lupus. I have known way to many people with fibro go into having lupus. Well it is getting late time for bed or to head that way. You have a good night. Just remember this earthly body is just temporary. After that we get our glorified bodies no more sickness, no more pain, no more suffering and no more tears. Hugs 🤗

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Thank you, unfortunately I’m not religious so don’t have the same beliefs.

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Pinkribbon88 I didn’t mean to push my beliefs on you wasn’t aware that I did until I read the end of my post. My faith is what keeps me sane and gives me hope that all this pain and suffering will one day end.

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I guess no matter what you believe, the suffering will end either way. Unfortunately I have Thanatophobia (fear of death) so it’s a touchy subject lol. I truly wish I was religious and believe me I have tried but I just don’t. I have nothing against those that do though, I envy you actually.

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Back in the 90’s going through the grieving process I did a lot of research on near death experiences both of individual’s stories and books written by doctors who patients had near death experiences. Mine was all done without the internet so books and audiobooks. Now with the internet and You Tube one can just google near death experiences and come up with tons of stuff now. I encourage you to do your own research on near death experiences. Especially the ones written by doctors on their own patients experiences.

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@Pinkribbon88, sorry I was pressed for time earlier had to take my husband in for his untrasound of his heart. You are right that if you believe in an afterlife or not when our physical body dies that it won’t be feeling pain anymore. Oh there is nothing to feel envy over regarding my life. I’m like you just a fellow chronic pain sufferer dealing with the never ending list of diseases that seem to go along with fibromyalgia. If there is anything I can do I will try and help you with let me know. Hugs 🤗

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I personally believe that those who have experiences such as these, are just dreaming in some form or another'. What they see or experience is, in my opinion, is just their own brains. I know some have been able to say what was happening around them like out of body experiences but unfortunately, it still doesn't make me believe. I've truly tried but I don't believe I ever will.

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