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Fibromyalgia Action UK

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Nicoleharvey28 profile image
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Hi all! So I'm knew to all this, had a few questions as to is this normal... I was told by my acupuncture lady 4 years back she suspected I had fibromyalgia, I have been suffering from pain and random syndromes for years, now they have finally diagnosed me with fibromyalgia, been hard to wrap my head around it but is it normal to feel so short fused, nauseated at times, sick to your tummy, in deep pain all over your body, super stiff and very moody? I guess I just don't get how someone can love everyday with this amount of body pain and feeling sick all the time, they have started me on meds to try and manage everything and to see what will work for me but it seems as though everyday gets a bit rougher with new pains, lots in my legs, back, neck and chest, just seeing if others feel this and how normal is it? I was told to reach out to a community and also a support group so I'm giving it a shot! All suggestions or stories would be appreciated! I have an 8 year old son and I feel I'm always short with him and just need to find some sort of way to cope with a new diagnosis and wondering how bad fibromyalgia gets for some! Thanks again

Nicole

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TheAuthor profile image
TheAuthor

Hi Nicoleharvey

I sincerely hope that you are feeling well today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! And I am certain some of the ladies will be along shortly!

I have pasted you a link below to our mother site, FibroAction, and it is full of useful Fibro info:

fibroaction.org

I always say that we are unique individuals and therefore we all react differently to both our illness and our medications, but what you have written sums up Fibro to a tee! I also think it is important to get the right combinations of drugs to help ensure that you are as pain free as possible. Another useful tool is physiotherapy and I would recommend it to anyone.

All my hopes and dreams for you

Ken x

clare_hart profile image
clare_hart

Ken says it quite well. We all have unique symptoms but share many of the same and to varying degrees.

Earlier in the day I couldn't get anything straight, forgot where I was going over and over; had the rice, both water and rice on boil till I smelled it burning. Started it over, got it on simmer, forgot the timer. I could hardly finish a post on the forum without my mind wandering/concentration shot, couldn't think of words, etc. If you ask me where my mind wandered or what I forgot, I couldn't tell you. Now for some reason, I am thinking more clearly. Don't know why.

Anyway, here are 2 links to the newly developed criteria for diagnosing FM. The older method, still in use, is the 18 tender points.

This is a shorter form of the new criteria:

neuro.memorialhermann.org/u...

This is one with a twist:

neuro.memorialhermann.org/u...

You can google the 18 tender point diagram. It is interesting to me to compare the results of both the new criteria and the 18 points to see if I fit both. I do.

I think you'll find that some of that short fuse is a result of the symptoms, like pain and concentration problems? It is for me. On good days when I sleep OK and pain is less, I am a lot calmer. All of us agree on one thing I believe. Don't over do it. Even on good days. For example, rather than do 3 loads of laundry, try 2 one day and 1 the next, 1 each day, smaller loads, etc.

Come here, share your rants and your pain, read and reply, enjoy the pic of the day, and let others support and guide you. This is a great place, the best of the FM forums I have found.

DAVEO profile image
DAVEO

Hi yes this is absolutely normal if normal is the right word. Yes it's one of those, some days are better than others but generally bad most times. I find that medication is the only release from the pain but it never goes away completely. Short fuse yes this is normal for me even at times wondering where it came from and it often can be something realy trivial, started to analyse before I flip and that is working but with a child of eight that can test the most calm person. Mine has just been diagnosed after 35 years of suffering lol, Tramadol does it for me but I suffer from RLS as well this isn't a condition I would wish on my worse enemy it's really bad at times and the tablets relive me from this but Tramadol is being stopped and only to be used in short term pain management. If your in a good relationship the illness can test that as I've found out, now having been be being divorced, probably not just because of the condition but it defiantly didn't help. sickness sometimes in the morning but that's only a few times a week, if you can get out and do some exercise this will definatly help I walk a lot and at times struggle,just that feeling that you have achived something is a help. I lay on my side in the featal position at night and this definatly helps, but at the end of the day you have to find what works for you. Medication I've have tried have been a antidepressant that supposed to help with the pain but if you suffer from depression already it makes it worse in my experience anyway. I hope this has helped a bit, your not on your own, their are lots of suffers out there all going through it day in day out.

honor1a profile image
honor1a

Hi Nicole,

Sorry to hear you are suffering as badly as you are, I have had Fibromyalgia since about 1994 but was diagnosed in 2000, I had to give up work in 2002! the mood swings I suffer are more linked with depression which I get more out of frustration at my level of pain more than anything, I do not take pain relief medication now but back in the early days I was on the highest dose of diclifenac (anti inflammatory) now not prescribed as known to cause strokes & heart attacks! so the strongest thing I take is paracetamol on my worst days! I do take 10mg of Escitalopram for depression, & I have an under active thyroid which I take 150mg of levothyroxine for also I am pernicious anaemic which I get B12 injections for every 8 weeks my body can't absorb B12 naturally from food, this bit is where I feel I could advise you, ask your GP for an INTRINSIC blood test, as that's when they discovered my pernicious anaemia! Wheni started getting my B12 injections, don't get me wrong here I still have severe level of Fibromyalgia pain, but my pain level did reduce slightly making daily existance a little bit easier to cope with! What I feel a benefit for relief & comfort go to a swimming pool even just to walk up & down the pool feel a little normal! As the water supports your muscles & gives you temporary comfort, I now swim 10 lengths of the pool after doing an aqua fit class just doing it at my own pace & built it up from there, I love it, I now do three aqua classes a week, which helps me deal with other days a little easier, it is also good for the social aspect as I meet the "girls" for coffee & chat afterwards. Girls is in inverted comma's as I am 55 next youngest in my class who meet for coffee is 62, but it's not just us oldies that do aqua ha ha give it a try it is a good morale booster as well as getting some physical relief. Wishing you well, sending you Hugs xx

splodge1 profile image
splodge1 in reply tohonor1a

Hi i have fibromyalgia and have had it for seven years, i did give up work, i also have polymyalgia, i take amitriptyline at night and naproxen , the amitriptyline helps me to sleep through the pain which prepares me to function the next day. without my medication i can not move, i am dependant on them for my daily function, and through the pain management clinic, i learned how to pace myself, on my boom days they call it, when you feel ok and try to do as much as you can then it makes you worse for months afterwards. this does not take the pain away but helps you to manage your daily life. hope this helps x

Hobnob profile image
Hobnob

Hi, Sorry to hear of your problems - be assured that you will find a way of living with them. I'm one of the (relatively) few men who has fairly aggressive Fibro as well as Rheumatoid Arthritis and Sjögrens Syndrome. I was a volunteer on the NRAS telephone Help Line and assisted many people (especially with regards to their employment issues) to understand their disabling conditions and find their own ways of coping.

My favourite tips (based on my own experience and testimony of others I helped) included:

1. The need to establish the correct pain relief regime. Doctors are now very open and keen to discuss medication with their patients in these more enlightened times. After much discussion with my Rheumatologist and my GP, I have new moved onto slow-release morphine sulphate to cope with the overall pain as well as fairly high doses of another pain-killing drug which helps with pain from the connective tissue and the neuropathic pain caused by my conditions.

2. The need to set proper sleep patterns. When pain keeps you awake at night, you often feel too unwell to get up at the right time and can miss work as a result. Good pain relief can help you sleep and you can often stick to your rising time for work. Stick to your regime (mine means bed at 10.30!! :( but I wake at 7.30 :) and lay in bed for a while till my joints are mobile enough to get out of bed, I don't (can't) now work due to my disabilities but I stick to my sleep plan rigidly.

3. Ensure you strike the right work/life balance.

Take care and don't let your Fibro disrupt your life to the extent that it rules your life.

Regards,

Bob

RayB profile image
RayB

Hi Nicole,

Just to add in something that has been helpful for me!

I realised that reacting to lives stressors caused my pain to be much worse.

I had to first start to see the association between the two.

Then I had to recognise my reaction to stressors.

Slowly I was able to get control over my reaction.

This did not happen overnight and took much work and attention but it was something that had been very worthwhile.

Don't get me wrong,,, I still live with much pain but at least I can have a bit of control.

Best Wishes, Ray

beckyglen profile image
beckyglen

Hi Nicole,

I'm so sorry you are suffering so much!

I was diagnosed about 5 years ago. I was a very fit active person and was in the Navy. My symptoms came on gradually after an accident training where I torn two ligaments in my knee. I was medically discharged Bout 6 months later and my symptoms of widespread pain and chronic fatigue kept getting worse. I kept going back to my GP for tests and was diagnosed with fibro about 18 months after my symptoms started. I was very lucky to get a diagnosis so quickly - I know lots of people suffer for years without diagnosis.

The flare ups can be really bad. I had started doing a nursing degree just before I found out I had fibro. I did manage to keep going until about 6 months ago when I had such a bad flare up that I had to take the last 6 months off on health interruption.

Learning to pace your activities and rest regularly can help a lot. I have found it very difficult to accept my limitations which has made flare ups more regular and severe. I am 30 now and often get really angry and frustrated that I cannot do all the things I want to do or that I feel a person my age should be able to do.

It is a good idea to ask your GP to refer you to a pain clinic. They can offer a number of different options to help you manage your pain.

Also trying to be kind to yourself and look after yourself as much as possible can help. Talking about your situation and how you are feeling with family, friends and the lovely people in this group can't help a lot too.

As for the short fuse and moodiness, I have always been a very calm and patient person but the combination of constant pain, insomnia, fatigue and medication has made me really moody. My husband says I shout at him loads and have gotten worse over the last couple of years. Having family and friends who understand your condition will help.

I may help to talk to your son and explain to him that you don't mean to be short with him and that it is because of the pain you are in because of your illness.

I really hope that you can get the support you need and that your symptoms ease very soon.

I you ever want to talk someone is usually always on here.

Take care & gentle hugs

Becky xxx

mitziblue profile image
mitziblue

Sounds like you need to go to a pain clinic sweetheart. They are better able to help access your pain and help find the right meds that will work for you. It does get worse as we get older. Plus there seems to be so many other illnesses that are linked to Fibromyalgia. Hope this helps honey!!! Hang in there, we are here when you need us!!! xxxx Mitzi

cutebird profile image
cutebird

Hi, saw your message, and just thought I would try and help. I know it's difficult when you first get diagnosed. You're not quite sure where to go to get help and advice. I have found a few things that help me. Deep tissue massage helps get all the knots out of your muscles. I found accupuncture very good too. Some local hospitals have pain clinics, where you can sometimes get some accupuncture on the nhs. I invested in a good mattress. It had memory foam on top, and a firmly sprung mattress underneath. It really supports your body and helps you get a good nights sleep. I hope this helps you, you'll find alot of support on this website too. Wishing you all the very best, Liz xxx

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