I just need somewhere to moan at the moment. I was off work for 3 and half weeks due to unusual pain and a flare up for me. Whilst I was off during that time I had a hospital rheumatology telephone on the 16th Nov. I told her I was not sleeping due to being in so much pain. She prescribe me 10mg amitriptyline. These have not helped me in anyway. Fast forward to last week and I received my hospital letter. The consultant has wrote that ' my fibromyalgia is surfacing'.
I've had lupus and RA for 5 years now. No one has ever mentioned fibromyalgia to me. I just cannot get my head around how a Dr can write that on my letter under my lupus diagnosis without even seeing me in person. She also did not mention that to me on the phone during my appointment. It has really thrown me mentally. My GP is currently on holiday but once she is back I'm going to try and get a telephone appointment with her. Hopefully she can put my mind at ease and just give me an explanation about it.
I returned to work yesterday. I'm still in so much pain but thought was best to try and get back into. Only week and half left till we break for Christmas .
Has anyone else found they have flared up since the drop in weather? Hope everyone is keeping well !
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LouLamb
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Hi LouLamb , im sorry to hear you are in so much pain at the moment. I have had a letter from my doctor that had inaccurate information in the past , it is quite disturbing. Can you email your rheumy or phone the secretary to question why this was put in the letter and if it is in you hospital notes . I hope you can get it sorted out as it’s obviously distressing you. Take care and stay safe xxx
I think I will try and do that. I will have a look for an email address. I just stunned someone can write that in a letter without even mentioning it on the phone or seeing me in person.
I hope you can get this sorted as its the last thing you need worrying you , i know doctors are very busy , but this is unforgivable. I get raynauds as well , it particularly effects my feet. I wear thermal socks and slippers boots when very bad , my doctor also said it’s important to keep your core warm as well, i also wear fluffy bed socks when i get into bed until i get warm.
I’ve been wearing 2 pairs of socks in the morning. I take one off once I’ve warmed up. I hate it when my hands turn white. They get so numb sometimes. I’m still trying to find a good pair of gloves that I can drive in. The ones I have I find it hard to drive it because they make my hands feel stiff .
Urgh I'm so sorry!! I've had more joint pain than usual. I am really interested in how fibromyalgia keeps popping up... I too had that label stuck on me on top of my sjogrens and lupus when I'm certain I don't have it... I wonder why they're doing it.
I hope your feeling better as well. I had a little google about fibromyalgia I do not think I have it. I think because I told her at the time I wasn't sleeping due to pain that she has labelled me with it. The last few nights the pain at night hasn't been as bad.
I would be as or more confused than you if a doctor told me about FM/fibromyalgia like you were.
As for the weather and pain increase it is always a trigger for me. Massive storms as far away as 500 miles will set me off days before it hits my area.
The worst for me is fog...when fog is anywhere around my area I feel like I’m dipped in boiling oil...it’s horrendous. I can’t take any pain meds due to my doctor’s orders. I’m on a high dose of gabapentin and I just have to ride out the weather changes. It’s not easy in a State where weather can and has changed every 5 minutes at times.
Hun you’re not really moaning just telling your true story...your truth.
I have been living with arthritis since birth. Now it’s morphed into multiple types. I understand the pain and it’s flarings.
My heart goes out to you as do my thoughts and prayers sweetie.
Sending you gentle gentle hugs and much love hun
Take care and I pray you will find relief soon. One thing I know for sure is that medicine is on a trial basis. You just have to keep trying them until you find one that helps.
Thank you so much. The pain is getting better but I'm so exhausted after being back at work for 3 days. I cannot wait for the weekend now. I can tell when it's going to colder before it even does as my joints always start hurting.
I’m happy to hear that your pain is letting up. Sorry you are getting so exhausted from working. I can relate. I worked about. 1 1/2 years after my doctor said I had to quit. A few times I’d simply collapse onto the couch after working. It was a workout just to breath!!!
Can surely relate to the weather changes. Unfortunately we can’t do anything about that.
So sorry to her that, it's distressing enough without specialists making assumptions. My mobility is taking a hit at the moment and does seem to be a constant as time goes on. I have been diagnosed this year with rumatic undifferentiated with many symptoms of lupus, but I'm still in the early stages. It's been a roller coaster ride with associated liver disease and yesterday I had an biopsy operation on my throat/tougne and I must say the safe were worth their waight in hold. However with my stiffness, blisters forming around my next and scalp my thought is very very sore, thus I can't sleep. And at the other end to avoid blood clotting the hospital fitted me with what look like pop socks lol.
Yes, LouLamb , I have been in considerable pain since the weather turned colder , but am determined it's not going to get the better of me ! Good for you for going back to work and good luck with getting some reassurance from your GP. Stay strong !!! Xx
I was surprised how much the coldness has thrown me. I've never experienced pain like I have been for the last 3 ish weeks. I think getting back to work has helped me a bit. I was very honest and told them I cannot do a lot. Even not doing so much of the big physical stuff I am exhausted. Glad it's Friday tomorrow and then only another week till the holidays. Hope you stay well x
Hang on in there ! It's obvious from all your posts that you are a very strong person and I feel sure that you won't let Lupus beat you . Hope the pain eases soon. xx
Hi Lou cold weather triggers a change for me .my joints ache and I feel more stiff.ive just got to keep my joints as warm as possible which is hard as a woman of a certain age i want to strip off as I'm too hot 😖 .I'm not surprised fibro keeps turning up as it's an overlap illness. The only meds that helps my pain is pregabalin .keep smiling xx
I've had to go back to wearing 2 pairs of socks at the moment. I also have raynuards so am constantly changing colour and I find that does not help my joints. At work when someone asks me how I am I just smile and say I'm fine. I know they could never understand !
Yes I say im fine too . I think people often ask how you are but really want to hear about all the little things that add up to us being so ill.big hug xx
Hi Lou LambI’ve just read your post about needing to wear two pairs of socks. I too have raynauds and particularly suffer with my feet at this time of year. They get so cold that I end up with chilblains and then infection. Antibiotics have helped to clear it up. But... I’ve now got the answer to my foot problem ! (If only my feet were my only worry! 🙄) I’ve bought ‘hot hands foot warmers’ from Amazon and although they can work out pricey if you need them every day, I have found them to do just the job! They last about 8 hours and keep my feet toasty all day.
Hi LouLamb, I am so sorry that you are in pain and that someone over the telephone has “ diagnosed” you with Fibro. Sadly many Rheumatologists do this. I have been diagnosed with Lupus in 2009 which was then changed to Bechets and Fibro, then Lupus again, then UCTD, then Lupus plus Bechets plus Fibro, then Fibro and hysteria, then MCTD and Fibro then mild UCTD no Fibro. It has been a nightmare to be honest. The worst thing is that they make these flippant diagnoses based on little or no evidence. I send you big hugs and hope that your GP can assist you and put your mind at rest. Xx
Thank you,It's been crazy to think that Drs are diagnosing medical conditions over the phone! I've always just had SLE and RA. I've been doing fine with that. I feel like I have come to terms with it and accepted my lupus as a friend. Sometimes we like each other and sometimes we do not! Just the thought of having another condition on top especially with the year it has been just seem a bit to much for me right now.
I know it is deeply unsettling. When my Lupus diagnosis was first questioned I began to question myself. The multiple and conflicting diagnoses since have just undermined my self esteem. When one Rheumatologist last year told me that all that was wrong with me as Fibro and hysteria I was devastated and said am I making myself ill? His response was if you get sick you will prove me wrong?.? Of course I took it deeply personally until I spoke to three other people who he had said similar too. Thankfully I did not have to see him again. When they bandy terms like Fibro about nearly every symptom you get is just attributed to it. I had pleurisy in both lungs which they said was just Fibro. I did not know until I went for a pre op check. Stick to your guns and challenge the diagnosis if you believe that the diagnosis has been made without due process. God luck x
Having or not having fibro 🤷♀️ The real problem is lack of respect. I do not like the way we are written about , rather than spoken to at times. Time taken to speak to us can afford reassurance and understanding but this seems to be the way things are , not acceptable though. Fibro every man and his dog seem to be diagnosed with. If the hell of symptoms are fibro then docs need to stop poo pooing them, and stop telling everyone who at some point had an ache or restless night that they have it. I’ve been told I have it , I haven’t , I have 🤬 and it just doesn’t answer for my all my problems, and nothing has helped some of my certain symptoms except hyrdroxychloroquine which isn’t a treatment for fibro, 🤷♀️ Indeed neither is the physical inflammation.🤷♀️
Let’s not go this route , I feel quite strongly about this, but I wish you well, hope you feel better soon, I guess all we can do is ask to be spoken to like the adults we are , it seems it is real , at least symptoms are, and needs to stop being used as a label for all and treated respectfully as well as us. You could well have ‘real’ fibro as it often accompanies as secondary but if so there are ways of telling you and helping rather than reading in a letter. Take care best wishes 🙏x
I just think it works both ways, and when respect received should also be given. When we go to these docs with health problems it should be us requesting the help they answer to 🤷♀️🤷♀️ Talk to us , we confide all this personal stuff to them which is not easy x
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