Only just been diagnosed

[EmmaJ89]

Hey I’m Emma

I have recently only just been diagnosed with fibromyalgia after months of back and forth appointments with the doctors and hospital. My pain started in May of this year and has progressively gotten worse and worse and it’s all over my body with the pains being in my legs, hips and shoulders the most.
I have searched high and low for help and just being looked at like “it’s not that bad”, even told to leave the emergency doctors as there’s nothing they can do. I have cried more times than I ever have in my life.
Eventually I was prescribed amitriptyline but after taking these for nearly a month I have seen no improvement at all.
From being an extremely active person with my job being on my feet all day and running around constantly I now find myself not being able to get out of bed some days.

I have read some brilliant tips and advice on here so far but I just wanted to reach out and ask people for some personal guidance as for the first time since this all started I actually don’t feel alone in this with people who wholeheartedly understands what I’m going through.

Thank you everyone

 

[SBee]

Hello @EmmaJ89 Emma
I assure you you are not alone in this, either physically or with you emotional feelings. Probably every single person on this forum understands the hurt and frustration of months or years of symptoms and the relief at finally being believed and diagnosed.

So welcome to you.

i also use amitriptyline for the nerve pain I get with fibromyalgia - it did take a couple of months to kick in and I did need to take a higher dose. Bonus for me is I take it about 2-3 hours before bed and it helps me sleep. Taking it early avoids the 'zombie effect ' the next day too. Not all medications work for us as individuals. So it can take a bit of trial and error. Saying that I like to take a single new drug for at least 3 months to see if it has a positive effect. Throwing too much into the mix at once means I cannot distinguish what may be working ( or not!)

personally I have needed quite a bit of time to get used to living with fibromyalgia, and the to actually fully accept fibro and all it can entail.

Do please ask anything you would lime help with, whether it be practical advice,or crucially a feeling of support. That helps me more than anything. People here really do understand.

take care, your time, and remember to be kind to yourself

 

[EmmaJ89]

Thank you! I will continue taking amitriptyline for a while longer to see if it does help me in anyway. I’m finding it making me feel so groggy in the mornings, I do try and take it 3 hours before bed but it’s definitely not helping me sleep just having that horrible groggy feeling in the morning. I feel like my mood is still very low, now I don’t know if this is due to the tablets or just dealing with fibromyalgia.

Just before I started to get chronic pain I did always have trouble with my legs/feet but as this has progressed dramatically it’s honestly debilitating at times for days. When this all started I had just taken over my own pub with my business partner, and now I just feel like I have left her completely alone dealing with most things as I can’t function some days and even on “good” days I can’t work as it’s just so physical. The constant feeling of being a let down and people looking at me like “oh here we go again” or thinking I’m just being “lazy” now I own the business (I have worked in this pub before taking it over for nearly 10 years)

I have 4 children and constantly feel like I’m a let down for them as I can’t do simple tasks most of the time.

I know stress is a huge part of fibromyalgia but without sounding dramatic I have dealt with stress my entire life so finally getting my own pub should have been a massive highlight for me, I was more stressed before.

Sorry for the rant but it’s actually really nice to be able to just say everything I have wanted to say with people who actually understand without the rolling eyes feeling.

 

[Auriel]

Hi Emma welcome to our forum, sweet's, you definitely won't get a "it's not that bad insinuation" here because it can be extremely debilitating, you're not ranting (you're just telling us about your life, and I for 1 like that ) I guess the fact you joined on Xmas day makes you our Christmas present?, They'll try you on things like amitriptyline 1st to see how it goes, it's a very bizarre condition (you can be really active and then bam! (this happens) stress can make it worse (you're not lazy, 1 of the worse things you can do when you're around unsympathetic people is gaslighting yourself to the way they imply you're being) you have a challenging health condition (and it can make you wanna cry sometimes) anyway nice to meet you

 

[EmmaJ89]

Thank you for your kind words. Xx

 

[Auriel]

You're welcome

 

[sunkacola]

Hello Emma, and welcome to the forum (the one that no one wants to have to join!) As others have said, we understand what you are going through and we are all here to help, and to offer our support to you.

Finding what works to help you get through the day and manage pain is truly a matter of experimentation, trial and error. And it takes a long time, usually, because you have to try only one thing at a time, especially if it is a medication, and you have to give it enough time to work if it is going to. when it comes to amitriptyline, many people get a "zombie" effect from it and no pain relief, but some people do get some pain relief from it. whether you decide to give it more time or not is up to you, but I have had a tendency to stop taking medications that give me the zombie effect because I cannot function like that, and I need to be functional at least during the daytime.

Please feel free to ask any specific questions you may have, and people here will be happy to tell you their own personal experience, whether it has to do with supplements, techniques, medications, or other things like how to talk to people about this and what it is like for you. I hope this forum will be useful for you.

 

[EmmaJ89]

Thank you! I’m definitely open to any suggestions from people to try and help manage the pain. I will try anything at this point and hopefully discover what ends up working for me. My biggest issue at the moment is my pain is mostly in my hips and legs, every time I go to stand up it just feels like I’m ripping my muscles apart and then walking is incredibly painful most of the time. This is obviously restricting my work life but I need to work to support my family. So anything to just help ease these to start with would be amazing.
I absolutely hate taking medication and honestly have to be forced to take ibuprofen for a headache (I gave birth twice with no pain relief ) but this pain has made me turn to medication through desperation for some relief but I’m yet to actually find anything that has worked. I took my two daughters to Disneyland Paris last month for their birthdays and was determined to not let the pain stop them enjoying it all so was prescribed codeine and this did help for the two days I was there but now it does absolutely nothing at all.

Also does anyone else find things like hitting your toe on something or bending your finger back unexpectedly just leaves you in pain for months! I did both of these things and I’m still in so much pain in my finger and toe with them swollen.

Honestly thank you all for your responses I really appreciate it

 

[sunkacola]

Yes, I find that sometimes the slightest little bump against something will cause excruciating pain that lasts for hours.....'way beyond what is even remotely reasonable for such a minor thing. I have not had anything last for months, but I think we are talking about the same thing. However, the swelling you mention sounds as if there could have been actual damage, and I recommend that you have your doctor take a look.

As for what will help with the pain in your hips, no one can tell you what will work; you have to discover that for yourself. But a few things you could try are:
Heat, whether a hot bath or shower, hot tub, or heating pad.
A TENS machine
CBD rub, or Arnica gel or cream

Also, if it happens when you stand up I recommend you try different sitting positions, different cushions to sit on, different chairs. Standing up in a different way, more slowly perhaps. Standing carefully and then not trying to walk for a count of ten or so to see if that gives your body some time to adjust to being in a different position.

When I drive for a half hour or more and then get out of the car sometimes the pain in my hips is very intense, and if I try to walk I am certain I am going to fall over. If I get out of the car carefully and then do not try to walk for 10 seconds or so that will sometimes pass. But sometimes I will feel OK at first and start to walk and get several feet away from my car, and then it hits. It's hard if I am in a parking lot because then I have to grab onto someone else's car to brace myself for those 10 seconds, and I am always afraid the owner will come along and not be happy that I am touching their car!

 

[EmmaJ89]

If I sit on the sofa, because it’s lower, I sometimes can’t get back up again without help. The pain is ridiculous, I use cushions and tried different positions but nothings helping. It’s like I have no muscles or strength. I love a really hot bath but can’t get in and out of the bath anymore without it causing extreme pain or getting stuck.
Today is a really bad pain day, no sleep so feeling very deflated at the moment.
I will definitely give all your suggestions a go thank you!
Oh I completely understand the whole standing up and hip pain, I do have to give myself a while before actually moving. The sudden pains while walking can really shock you into grabbing the closest thing.
Is the feeling of having no muscle strength a common feeling?

 

[SBee]

Yes! @EmmaJ89 Certainly had bad feeling of muscle weakness, even trying to lift my arms up from a prone position. Gradually this eased, but does reappear if I am particularly stressed or exhausted. I'm not to sure how it eased. I think it must have been a combination of gentle movements and trying to pace myself. Prior to trying to listen better to my body, and get a better understanding of fibro, I tried to 'carry on as normal'... But living with fibro makes us live a different normal.
If I do too much ( and at times I definitely do) I am in the boom and bust situation,so my symptoms intensify, including muscle weakness.

Dont be too hard on yourself as you learn to adjust. I still definitely get things wrong, cant always balance what I want\need to do with what my body is actually capable of. And that, if I am in a flare, includes something as basic as reaching for a cup or moving up from a chair. I started to think before I tried to do something and tried to move with more consideration. It slowly got better once I accepted my life had altered, and it has improved. Not as I once was, but better than it has been. Go slowly.