Advice please for 1st rheumatology appointment

[kcc73]

Hi, I have been suffering with chronic fatigue, pains various places , IBS for several years. Full disclosure, also menopausal! Ive been back & forth to GP & as I had stress in my life (been calmer for couple yrs now) have been dismissed. Pains worse last year especially pelvic & legs & back. Had pelvic investigations & nothing identified as causing pain. I've been in HRT 9 mth. No improvement. So now referral to rheumatology & my appointment is next week.

I'm v nervous: have experienced so much gaslighting my medical prof in past. Im sure I have fibromyalgia & read so much about it. But I'm now v apprehensive about appointment:

Tips for how to open consultation. Afraid I'll say wrong thing which suggest it's all in my head . Should I say gp & me think fibromyalgia as tests I had normal? (Gp has written in referral ? Fibromyalgia ) but she told me rheumatology have to diagnose.

I have extensive medical history. Yes some is MH related. But I've had joint issues in past & the fatigue & pain currently is soo debilitating. I can't work & hardly leave house. Is a diagnosis Fibromyalgia helpful ??


Any tips for 1st appointment welcome. Tks

 

[SBee]

Hi @kcc73 i swear I could have written your post myself. Am fully aware of the mad combination of undiagnosed conditions which have symptoms that are hard to attribute to definite condition (s). In a very short time I was hit with a lot of external stress in my life, the perimenopause from hell, MH problems and unidentified joint pains. So I genuinely understand how overwhelming it can all seem when it seems everything is coming from all directions.

I tried to sort each problem out in order of the worse impact it had on my life (and mind). So getting the correct hrt took some doing, but after a year I finally got the correct dose and am stable hormonally speaking. I had mistakenly assumed hrt would sort my joint pain- that was so wrong! I also take medication for MH.

I kept having bloods taken which did not show the suspected rheumatoid arthritis. I knew I had existing osteoarthritis in my hips though.
The chronic fatigue was worse so I was sent to and ME\chronic pain clinic. The GP diagnosed fibromyalgia BUT insisted my own GP send me to a rheumatologist for further checks. There I was formally diagnosed with inflammatory arthritis ( simi lar to Rheumatoid arthritis) with fibromyalgia and osteoarthritis.

i should note that my own blood tests do not show a positive result for inflammatory arthritis, but the consultant based my diagnosis by examination, xrays, and scans. This is called seronegative inflammatory arthritis.

I never 'perform well' in medical appts. This is because when I had ME over 30 years ago, it was quite new, and it took an entire 4 1\2 years before a dr told me what I had. Hence my distrust of medical professionals as a whole. ' invisible conditions' can make most of us feel as we are not believed.

i think I wrote on this forum about a year ago when I was facing my first rheumatologist appt too.

I would suggest making some short notes for your appt, just little one word notes to remind you of questions you may have. If you feel more comfortable you may be able to have someone you trust with you, to help take notes maybe.

Make a list of your symptoms, from the most severe downwards. They may want to ask you to expand on these.

I never remember everything that is said - so ask who you can follow up with post meeting.

I may not word this properly, but you are believed. A DR would not 'waste' a valuable appt if they did not agree your symptoms are very real. I know it feels like you are banging your head against a brick wall, and sometimes it takes investigations to eliminate some conditions as much as finally being able to get a definite diagnosis.

i dont know if it will help, but I recommend these sites,Menopause matters and ( and forum), Versus Arthritis. The first has a wealth of knowledge and personal experiences, the second is all forms of arthritis, but also about fibromyalgia. UK based, but the info remains ooen to all.

I tend to be pretty open about my health if it can help someone else. Some health subjects people want to keep more private ( as it is of course their right) but if I may help in any way, do ask. It seems we follow a similar path!

 

[kcc73]

Hi @SBee , Firstly thank you so much for taking the time to post and with so much detail. Rally appreciated and super helpful.

I could relate to a lot you wrote too : re performing I medical appointments I have that too , since I hit a crisis point with my MH 7 years ago (long story; I've had a child with a severe chronic health condition most of her childhood, in/out hosp for long periods , & she was doing better when I was forced out my job : created a breakdown). But when reached out for MH health support , I saw the most incompetent MH professional who I won't repeat what he said to me but its led to long lasting traumatic feelings & my guard constantly up . This was the worst incident (he was actually sacked after an investigation so done justice but not helped my trust in health professionals- and I'm an ex nurse !!) but had many others MH / general practice / gynecologist last summer (male) who carried out such an excruciating examination I had utis & bad pain for months after (now I wonder if it was so painful as I had fibromyalgia ?? I'm usually finding with exams ). But he also.told me despite fact I have multiple fibroids (too many to count ) that they WONT cause me pain . Last year with the pain mainly pelvic &back& legs I was searching for answers in that area. I have really bad IBS too.
So I decided to finally try HRT (I was nervous as mum died breast cancer ) but after getting the checks I was given the ok. My gp seemed know little about it , despite all my symptoms, being female & not much younger , never once suggested it ! I actually paid (don't have much spare cash) to see private menopause consultant as felt for peace of mind I needed to. And for 9 months been on it. Actually had my review last wk & advised increase oestrogen a bit to see if help with night sweats but it made me feel v nauseous so back to 50 til I'm more stable (it's not helped with anything to date tbh but I feel reassured as I have osteopenia so will help I'm told w bones.

As you can see like you happy to share !
I have quite a few , or *had* quite a few health stuff go on in adult hood . I've been looking back at my notes and can't believe how many times I have been c/o the same symptoms (pain fatigue to GP ) since 2020 ISH.

What I'm scared of re rheumatology appointment is when I recall my health declining physically quite significantly, was after my breakdown. That's not a gd opener to rheumatology I reckoning!!! Mentioning MH at the start ! But as I was screaming to get help & not getting it I lost weight, developed eating issues for first time in life & all symptoms blamed on lower weight I did get referred for treatment but 2 year wait ! During that 2 year wait I lost energy for doing the regular exercise I used to do. Plus when I did light exercise it made me v v fatigued & get muscle pain - pay back. I got regular pains various parts of body esp legs . Finally had therapy and did really well - but I was at good weight for some time but still completely flawed unable to exercise etc. Therapist even said unusual. Thought something else going on. Told GP. She just said it take time for my body to recover. But I was nourished yet feeling worse. By now we'll into peri menopause so that's when thought HRT needs to be tried. Slow process owing to past medical history. But another year and not just no better but a lot worse. Im bed bound largely - never went back to work even though now daughter doing well at at uni. Still have another child at home. I just do what I have to do. At Xmas stayed home when family travelled. Have to go to bed v early & have pain most the time , something's , especially mornings , lie in bed pathetically weeping as so painful.

Small episodes of more joint related stuff happened but i dismissed. About 2016 I had a sudden flare of pain in toe & finger joints. Went on for 2-3 mth. Had x-ray & feet showed osteoarthritis (,& bunions) . I took some natural supplement and it resolved. I have osteopenia. I have jaw joint issues. Could this relate to something not fibro?

I'm afraid I'll pre direct them to fibro as that is what the referral letter says. Will they automatically go to that ? Then what if they don't 'even ' diagnose fibromyalgia ?? Will I come off worse ?! I know there's no cure !

I did have to have a relatively big op.last Oct on jaw (it was broken and realigned ) and things generally with fatigue worse. Can stuff like operations trigger fibromyalgia?

What should be opening thing I say ? (There's a quick on questionnaire asking " why do you go to the GP " .!!!
And what NOT to say.
I've rambled but what I wanted to say was I totally get the not doing well at medical appointments...if they start suggesting I'm wasting their time , or don't listen ,believe , I get teary. Then it's game over. It's all in your head !! So husband coming with me.

Sorry long post

 

[SBee]

Hiya @kcc73 I always think I am going to write a short post but it ends up like a mini saga... So never think you are rambling, you have something to say, the same and for any of us, we deserve to be heard.

I'm glad your husband will be offering moral support to you on the day if it gives you added confidence. Thats a good start.

I'm thinking back to my first appt and wise words from other members here advised me not to admit I dont do well in medical appts. I was already diagnosed with fibromyalgia so was in essence being seen to see if rheumatoid arthritis or similar was likely (it was). Its an attempt to go in feeling stronger in ourselves. You are there because your gp believes you.

if I remember rightly, the consultant led with saying your gp has referred you for suspected RA. Yours may well say that you were referred for suspected fibro of course. Its important to accept and believe for yourself that fibromyalgia, is a very real and debilitating condition. Have that confidence.
you have already 'proof' from xrays that you have osteoarthritis. Of course I cannot diagnose if you have fibro, or another arthritis etc, but yes fibro can worsen the level of feeling both existing and new pain.

Stress, both physical and mental, can be among the triggers for fibromyalgia. Interestingly the first GP I saw when everything was crashing said she thought the fibro and chronic fatigue were triggered from perimenopause.

I suggest that at this point, you neednt worry so much about the possible reason of what has caused all this ( I am aware you are concerned it will all be 'blamed ' post breakdown). That time has gone - its the medical professionals time to diagnose you on your actual symptoms and find the best treatment for you. Obviously they need to ensure you have had adequate blood tests etc to exclude anything more obvious.
Fibromyalgia is often diagnosed once other tests have been done and exclude other conditions.

If you have the first opening line, I would suggest something like " my main symptoms are pain throughout my body, extreme chronic fatigue, muscle weakness, that have so far been unexplained" this is having a severe impact on my daily life. This has been going on for X years, and is worsening. " Something along those lines that is correct for you.

if MH is brought up in my case, I now say "yes, as I live with chronic health conditions,this is very debilitating physically and also impacts my MH .

i cant advise re the jaw, hopefully someone else may know more.

have your one or two word notes of what you want to say or ask if you feel you are wavering, to help stay on track, to refocus again.

you may or may not be diagnosed with fibromyalgia, or even something else, but please be assured you GP has referred you because they do see your symptoms as real.

as for the hrt, do ask your menopause specialist for advice, but when I was increasing patches the big jump in dose could make me feel it was too much - like many women I would cut my patches say going from 50-75 wou ld have the 50, then only half the 25 so increasing to about 62.5. Then when I felt stable I would increase to the full 75. As I say, do ask your specialists if this may be ok for you to try.
i ended up on 125 and have been on that for about 18 months now.

Oh, and also have fibroids and in the past a serious eating disorder too! Strange coincidences!

i saw a new rheumatologist consultant just yesterday. Whi lst a previous consultant would only discuss the arthritis, yesterday this one discussed with me the impact my fibromyalgia has on that condition, and on myself as a whole. I was extremely nervous going in with that fear of not being believed or listened to. But I had my short notes I had prepared, I had done some research on my conditions and came away
with a clearer plan of my future treatments.

I hope some of my waffle may help a little. Go in with the pre knowledge you are a valid patient with real symptoms. Your GP has referred you because they believe you and want to help you get a diagnosis to help move forward. I wish you well.

Again, do ask anything if I or anyone on the forum can offer support.

 

[kcc73]

Thank you so much for your post full of really helpful information & support. Yes,we do seem to have some similarities. I did wonder whether a bad few yrs with an eating D could trigger fibromyalgia. So little research on EDs with menopause, so there won't be anything on that. Bit just a thought : why do we suddenly become so ill and unable do much ? Guess acceptance includes not knowing how it was triggered.
Hope you having a calm week. X

 

[SBee]

@kcc73 I think our bodies suddenly hit a serious chronic crash simply because they just cant keep going with all that is thrown at it? Its hit that point where it just cannot take anymore.
In some ways people can understand a MH crash better that a physical one? Most people get that a mind can become overwhelmed for many reasons, well I think the body is the same. And the mind and body, as I see it are very closely linked and impact upon one another.

The human body ( and mind) are amazing things, our systems are designed to try to fight off and recover from illness and stress etc- but when its hit by too many things and over a great length of time? Its just too much for it, and can no longer is able to function as well as it once could.

Thats what I feel anyway, am sure many people have their own thoughts and the medical professionals will know better than me.

 

[kcc73]

Hi @SBee , I hope you are doing ok this week. I had my appointment with rheumatology today , seeing a senior Registrar. It went as well as could I think - thanks to your help & coaching with words etc . You helped so much .
So yes he concluded Fibromyalgia (he actually said CFs/fibromyalgia but I think my fatigue is the normal part of fibro ).
As you know well , there's huge sense of relief by it also mixed feelings about what now. And have they definitely ruled everything else out ?
My husband was great and came with me. I told him if I started to struggle,get emotional etc , if the Dr bring "difficult" as I've experienced before - to intervene and help. But I really hit lucky this time I think.

As the assessment went on I was amazed how many other things I have or had wrong with my body ! But although I have osteoarthritis in hands & feet they ok now ; I've had other weird things like Raynaud's in/off my life but never persistent. So those things don't add up to anything else.

But he did give me a conclusion,& explained how got there (I had had already had pretty much a full ANA panel as I was in hospital in October with a severe rash incl vascular non blanching rash and they tested them - all negative).

So after so many waiting lists I've been on for assessment and treatment this past 6 yrs , which on average been 18mth, I hit the jack pot this time with a cancellation and a thorough assessment. And he didn't 'pounce' on my MH !

But as I had already read up on fibromyalgia I knew there isn't a cure etc. And didn't ask too much about treatment+ although he didn't offer much other than a website. No discussion of pain killers. Said the pain specialist best for that. (Won't be seeing til October!). But I know roughly the options. But I Was pleasantly surprised to hear they have a fibromyalgia nurse, so I've been referred to that.

Obviously spent a few hours contemplating what do I do withy life now ! But as this brilliant American lady who does a Fibromyalgia podcast , your job becomes keeping yourself as well as you can !

I worry something could be missed - that's me, a worrier plus my mum died aged 49 breast cancer. But overall Indo feel empowered , I think and now I can tell family & friends what I have rather than saying yet again not well to attend. And hope they understand & empathise more (I've pushed myself more than should at times for others as pressure to.contribute (eg my dad's 90 last yr).&felt my siblings didn't understand why I could t do as much as her to help.

Here I go & waffle again ,!

Lastly , do you know much about cortisol in body ? The Rheumatologist did wonder if my cortisol ok.ss I have a natural low body temp & pulse, but have had tested couple of times. Last was 2022 & it actually at top end of normal. But I researched,& apparently these random tests are v v unreliable and shouldn't be done.
I fit most the symptoms of Addison's. So I thought about asking GP about texting - the proper way. But apparently can't be tested if on HRT .

How long does it take to believe the diagnosis, which at the end of the day a name for when nothing else found to match symptoms!!!

Thank again . And hope to keep in touch.

 

[sunkacola]

@kcc73 ...If you have not already, I recommend that you read this post.

S

Thread 'My advice for managing fibromyalgia (especially for newcomers)'

Jul 21, 2020

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a prescription and there are no guarantees. But I believe that if you can do these things, it will improve the quality of your life.

First thing to remember is that Fibro is not a death sentence and if you learn how to manage it, it will very possibly not always be as bad as it is now.

I was at...

• sunkacola
• Replies: 29
• Forum: General discussions about fibromyalgia

• 
• 

There are a lot of things that you can do for yourself to help you to manage fibromyalgia, apart from taking pain medication. Many people find that if they do their own careful and methodic experimentation, they can find things that will greatly help them and may even alleviate some of the symptoms of fibro.

As for what do you do with your life now....you keep living it. You just make a few adjustments, which you have already been doing anyway because this is not a new thing for you, only a new diagnosis. Remember that others cannot and will not understand unless they also have had chronic pain. Ask only that they don't make your life harder. And you get to say what makes your life harder, and not to tolerate that in your life.
Some of the time you have to put yourself first now, because if you don't rest when you need to and avoid pushing yourself you will only feel worse for longer.

How long does it take to believe the diagnosis? That is up to you. I find that the diligent practice of Radical Acceptance has been one of the most important and helpful things I have learned to do since I have had fibro.

 

[SBee]

Well @kcc73 you've had quite a day then. I know how stressy these days are,especially when we have had such negative previous experiences. But as far as I can see you couldn't have had a fairer result really.
You have a diagnosis ( and next comes the 'well I know what I have, what the hell do I do with it now' thoughts) for me, I like to research as much as I can from reputable sites - as @sunkacola has shown above, that post is invaluable.And keep on asking anything on this forum, we all experience a variety of symptoms and their effects, and also treatments that may or not work.

I too have CFS as a 'separate ' part of fibromyalgia diagnosis, they often go hand in hand, and fatigue plays a big part from r many with fibro.
I think that CFS is maybe treated on its own, so if the fatigue hits you worse, possibly the nurse or pain clinic can help with that side.

Acceptance really does help - but that probably not happen overnight, there are a few emotional stages to get through - certainly in my case. So think that you may be in for the long haul. Above all, I suggest going slowly and with kindness to yourself.

Cortisol.... I too diagnosed myself with Addisons, my brother has had this for many years. This was prior to my full diagnosis of fibro\cfs\inflammatory arthritis. So I did have a cortisol test at my gp surgery, who then sent me to endocrinologist in hospital. Yes, I was on hrt at the time, checked with them and they assured me patches were fine - I think oral hrt was a no. If you are sent down this route do check carefully. Anyhow, that test came back ok. I would not be confident advising you about cortisol. If it is not an issue of mine, I do not read up on the subject as my head is too full of more relevant stuff

I understand needing to eliminate any other condition, been there done that in some ways. But Fibromyalgia is very real. Believe it yourself, others you tell may not understand it, but it really is a 'proper ' condition,dont doubt yourself.

Well done you - and your supportive husband. Go slowly, learn what you can, and listen to your own body as to what it can do or cannot do. Thats what I have learned.

And thanks for the update - think we all lime to know how one another are getting on, or to be in touch on days when they are not.

Do take care, and hang around!