I joined a little while ago and have been watching and listening and learning. I will explain a little bit about me and a problem I have.....
A few months ago, out of the blue I started having anxiety and panic attacks, difficulty breathing, chest pains etc all the usual that comes with it. Our wonderful friends at 111 diagnosed me with a heart attack and told me to call my own ambulance, which duly turned up and explained it was a panic attack. Since then I have had several ECG's , all clear, thank goodness! But was stuck as to why my IBS was flaring up more and why I was in quite a bit of pain, and couldn't sleep properly my go didn't know what it was either. I spoke to some family members who, spoke to others and it turns out my brother and father both have Fibromyalgia! So I spoke to the GP who has done some blood tests and says my inflammation markers are up, so he has referred me to a rheumatologist for a diagnosis of whether or not I have fibro! Gotta wait till late September to see them which is fast for the NHS.
My symptoms are generally massive difficulty getting to sleep, lots of pain in my left shoulder and arm (it moves around a bit), pain in my right arm and shoulder but not as bad, lots of upper back tightness and pain ( this causes my chest to tighten and makes my breathing difficult, setting off an anxiety attack), lately I have also been getting a lot of stomach pains and periodic chest and leg pain. I wonder if anyone can relate to this?
I am also trying to figure out if I can carry on running my little cleaning business or should possibly run it down/close it as I am finding it difficult to be comfortable driving and then working?
Sorry it is soooooo long I will try to make future posts shorter!
Sean
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Sean2375
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Hi I can say I'm new to but u will get a lot of help here I love it.....I all so have a lot of pain and I have fell so much,I have ring in my ear,I have fibromyalgia and I have been doing my best to get my SSID I have a lawyer now bc then just told me I have this everything will be ok...
Please forgive me if I tell you anything you already know! Please also bear in mind that I am not a doctor and am just speaking from my own experience of Fibro. I have had Fibromyalgia for over 30 years. I also have Chronic Fatigue Syndrome, Generalised Anxiety Disorder, HMS and depression, amongst others.
Because Fibro is a syndrome it is a mix of various symptoms. This is one of the reasons why it is so hard to diagnose. Many of us here have had to wait decades to get a formal diagnosis. However, just because you have a diagnosis that does not mean that you will not come across people in the medical profession who doubt that this condition actually exists! Confusing huh?!
Fibro is not thought to be hereditary. There is no blood test that will definitively tell you whether or not you have Fibro.
Personally I think your best bet is to wait and see what your Rheumatologist thinks. He/she is the specialist in the Fibro field.
I would not think that it would be wise to close your business down until you know for sure what you are dealing with, if you can possibly manage to keep going.
My concern is that you will get lots of differing opinions from us and you will end up more confused than you were in the first place.
Well .... those are just my thoughts. I hope they help.
Hi Lu, I am waiting for the rheumatologist to give me a formal diagnosis (hopefully, one way or the other)! My main concerns are that I am really struggling with both the 'fibro' pains, lack of sleep, and mostly the panic and anxiety attacks, these are making it increasingly hard to do what I have been doing, and my dear wife who has Charcot-Marie Tooth wants me to slow down........a lot! If I can I would just scale back to less than 16 hours a week and claim ESA to give me time to get on top of everything!
I understand that you want and need answers. Unfortunately getting a diagnosis of Fibromyalgia is just the beginning. (I'm really sorry if I sound so negative, I am just trying to explain the reality of it).
It is not a case of you have Fibro, here are the pain killers and you get ESA.
It has taken the majority of us here years to get the right set of pain meds that work best for us. There is no one size fits all. I still don't sleep (like the majority of us here), I am still in a lot of pain and am currently changing my meds again.
You then have to decide what other help you need to be referred for. For example some people have waited more than six months for a referral to a Pain Clinic.
You cannot just get ESA. You have to apply for it and it is a very lengthy process with no guarantee at the end of it that you will get it.
I could explain more, but can you see what I'm trying to say? There simply is no quick fix unfortunately.
I know the diagnosis won't be quick (unless I'm lucky) and I know it takes a long time to sort out the appropriate meds.
As I have had the panic attacks for 9 months and we are still trying to find meds and cbt techniques that work for me consistently. I also know ESA can take a while to sort out as I had to sort my wife's out.
The only reason I am considering it at all is because between the 2 conditions I am finding it increasingly difficult to work at the pace I do.
I understand more than you might think I do, just how crippling anxiety attacks are.
I am sorry but I don't know what your wife's condition is.
Your Rheumatologist will give you a decision when you see him/her. It is the process of sorting out meds etc that takes the time.
I'm just thinking off the top of my head at the moment, but have you looked into working under 16 hours and claiming Working Tax Credits, or do you already get them?
I wanted to say that I hope you don't think that I am being unkind or judgmental. Quite the opposite.
I just think it would be wrong for me to say everything will be fine, because from my own experience and that of my fellow Fibro friends, the path from diagnosis is far from smooth.
If your GP already thinks you have Fibro can he/she not prescribe you with medication now?
I am getting confused! Probably because I'm tired.
Hi bluemermaid we know you just trying to help. And you are correct in every thing you say. And even after 30 years its just has frustrating for you. I so here this and I know nothing. I've only been on this site less than a week and had some good advice, including from yourself. I feel your pain as well because I have finally connected to people like yourself and others on this site. I now don't feel alone, thank you. Sean it is to early to give up, I fought it for 8 years before I left and it was only my brain that made me leave, if your body is still working don't give up. Hugs to you Bluemermaid think you are a brave and caring person, your message gave me a lift x
All you have to do is click on my name. My profile will appear. On the top right hand corner of the page will be a box which says "message". Click on there and then write your message xx
I'm glad I haven't upset you. Essentially I didn't want to lie to you.
I know it's a bit off topic, but does your wife get PIP and do you receive Carers Allowance? I'm so sorry your wife is so poorly.
Anxiety meds are awful (in my opinion) I have tried loads and none of them have agreed with me either. I find it totally ridiculous that the side effects of a lot of those meds are depression, panic attacks, etc.
I have been extremely ill, more than once, with horrific side effects from anxiety meds. I don't suppose your GP will prescribe you with Diazepam or Lorazepam due to the problems with addiction. You could try asking for them if you haven't already had them. He may give you a short course just to give you a break.
I am no doctor! But, how would side effects from anxiety meds affect pain killers etc? I have an extreme intolerance to most antibiotics and steroids. I also have dreadful trouble with side effects from antidepressants, but thankfully I can take pain killers.
Have you considered changing your GP? Just a thought.
I am really sorry that I have been of no help at all.
I wish I could help.
I'm sending you and your wife hugs. I hope you do manage to get something sorted.
Thanks for the hugs, you are being a great help. My GP is generally very good and has been a great help with many of my wife's medical problems, unfortunately his weakness is probably mental health.
He is currently monitoring me on a monthly basis, he did give me diazepam (purely for emergencies) I have difficulty with potentially having to drive after taking diazepam as I am on call.
It would seem we are both in a similar boat with not reacting well to anxiety meds. I hope you get some relief soon yourself.
I've had clinical depression all my life, (I am 54) and I have rarely met anyone who knows how to help with mental health other than the Project Workers at MIND.
Is there a MIND where you are? Out of desperation, I have been taking Quiet Life tablets. I didn't think they were really helping until I ran out of them. Also have you tried Bach Rescue Remedy?
I will message you again in a few days to see how you are.
I don't know if their is a MIND near me as I have been working with my local NHS mental health team at a CBT programme called Let's Talk Gloucestershire. I will look into MIND over the weekend.
Meds wise I am only on propranolol and Kalms, normally that keeps me fairly balanced, this last week not at all. I have got some rescue remedy so may try that a bit later if the Kalms aren't helping.
I think I need to explain that my mental health nurse wants me to drastically reduce my hours from 100ish per week to as few as possible. I also drive a minimum of 700 miles per week. It is hard to reduce those and keep my business going in its current form. My big thing I feel is that I need the time to get my head and body as straight as possible so I can live the best life possible.
It is interesting that we have such different experiences as I found contacting the local Mind one of the most unhelpful expeirences - I contacted them because of my own deep depression but because I had previously worked as a mental health practitioner they gave me their most difficult client to support, turned out she was someone who only knew two ways of relating - abused or abuser - and I wasn't willing to be either. I found the whole experience distressing as it not only undermined the little confidence in my abilities that I had left but it also left me feeling unable to turn to them again for support for myself.
However I do know some local branches are really good, just not all. My most helpful experiences have been largely outside the NHS but also one NHS Consultant who I turned to because I had come across him in another context. Other than that I have made sure to keep outside the statutory mental health services as although many individual workers are very good the system and process of seeking help, being assessed and getting treatment are at best inadequate and at worse damaging.
Hi again mermaid, seems to be a connection, I am 56 and not wanting to spill my lifeout, iI've had lots, lots of serious probs withdepression since iI was 13 was hospitalized for 3 months so I well understand the D word have and do get a lot of support through my gp, I have a care plan they set up and my gp good with mental health. omg on here I seem to have verbal diorrear what is it best get back in my closet, sorry.
I got your earlier response to mermaid. On sites like this verbal diarrhoea can be helpful as it means we can help each other easier.......so stay out of that closet!! Lol!
I don't have arthritis he checked that first after my markers came back raised. I could have multiple conditions like most people I just want answers so I can plan ahead.
You mention other family members have Fibro, just to clarify as it has been mentioned it is not hereditary , while this is true it is thought there may be a genetic predisposition to developing Fibro which explains people having family members with it too.
I hope you get your diagnosis soon & until then we are all here to listen. Nice to welcome you as another member of the community
These are REALLY useful articles on Becoming an Expert Patient, I had not come across them before so thank you. I have found medics in more middle class areas welcome informed patients, but where I am living now the medics seem to think it confrontational if patients seem to know or want to know anything - experts know best!
We have the 'All about Fibro' factsheets that are you can download & print but the Expert Patient Range do not have this feature as far as I knew. They can be printed from the site tho'
You're right as ever. I downloaded the 6 factsheets. I seem to have copied and pasted the expert patient info on to a word document - so not entirely orthodox
Arymretep, You are quite right, Fibro is not inflammatory so if markers are up the team may be looking for an inflammatory cause. But it might be that Fibro is a secondary condition
Hi Sean, nice to meet you. It can be very frustrating awaiting anwsers and diagnosis. I hope your rheumy is quick to provide you with a diagnosis which will enable you to get the best treatment to attack those symptoms head on and that you finally get some well deserved relief. Good luck 😀
Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I want to genuinely and sincerely wish you all the best of luck.
Secondly don't worry about the length of your post. If you have something to say, then say it, and be as clear as possible, which you have been. I cant improve on the replies you've already had so I wont confuse things.
I can certainly relate to many of your symptoms, but as you're gathering, they're not definitive.
My own diagnosis was fast - ish, and a result of eliminating other possibilities one by one.
Good luck, and I'm sorry, but September must seem a long way away.
Thanks for all the welcomes and responses today! I was wondering if anyone suffers with a lot of non-IBS stomach pains, as I have been suffering stabbing a hey pains for the last two days?
Hi Sean, these pains could all be due to the panic attacks, I'm not saying they definitely are, but the nerves in our digestive systems are always effected by stress. Have you thought of trying something like Yoga to help with calming you. I think there are things on YouTube showing some of the breathing techniques that help you to calm down. I used to have terrible panic attacks when travelling on the underground. I even got permission to do flexitime with work, so I could just get off the train if it got really bad. Since doing Yoga I've found the breathing exercises really help. It gives you a "tool" you can use in times of stress. Just by slowing your breathing down, it creates a relaxed feeling. Best wishes MariLiz
Not to bad, once I got to sleep last night, have only just woken up and got up after being moaned at as supposed to be going out. Outside of that usual aches and pains from neck, shoulders and upper left leg.
I honestly cannot remember what feeling good is like. On top of 30 years worth of Fibro I have just had Pneumonia for the second time in 4 years, followed by a horrendous kind of rash/large blisters all over my neck and hands. None of the doctors at my surgery have been able to diagnose what they were.
Why don't you ask your GP to try you on some pain killers? Surely it must be worth the risk of having some side effects if you are really suffering?
Do you have weekends off? If so, you could trial them when you are not working. You will need to start on a low dose if Diazepam makes you a bit woozy. What strength are you on?
Apologies for all the questions! Just trying to think of the best way to make some suggestions.
Sorry to hear about the mystery blisters! I got given some Citalopram on Thursday but haven't been able to take any yet as I haven't stopped working! I don't get consistent time off due to the business, that is why I wasn't sure what to do about it. I have Diazepam for emergencies only so haven't taken any yet, can't check dosage at moment as out on call. Will message the dose over later.
I was looking at trying to change my work/business focus to something like the Betterware catalogue business as I can reduce and increase hours based on what I feel capable of.
It's a great idea to look into changing your job to one which will fit in better with your lifestyle.
Just one thought - do you think there is enough of a market in your area for a Betterware catalogue? Again, not being negative, just playing devil's advocate.
Do you currently run your own business or are you an employee?
The Diazepam will relax you, which kind of helps with the pain (my experience only!) but I would consider keeping hold of the Diazepam as long as you can in case you need it for panics.
I'm trying to make suggestions to help you but can only go by my own experiences.
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