I am new to this site but have been reading some of your experience in regards of your fibromyalgia. I have felt extremely lonely with my symptoms and have found it very difficult to explain the number of symptoms that l have been experiencing. Since last year September l have been telling my Gp how l have been feeling in regards to symptoms I have had severe pain in my legs and hands and bad headaches recently l have bad pain in my lower back neck pain numbness in my hands pins and needles in my feet stomach cramps and my muscles just hurt all the time. I find when l go to bed it's hard as my muscle feel very stiff and if l manage to fall asleep to deep when l try to move my hips are so painful I cannot move. Im so tired doing the school run feels unbearable some days and l reduced to tears due to the lack of energy l feel.
My Gp did a number of blood test which came back with nothing concerning l went to see her today and explained that the last four weeks has been unbearable and l finding it hard to cope alongside my other difficulties.
I ask her if my symptoms could be fibromyalgia she she said it could be and gave me some pain killers Naproxen to try to see if l feel any better
I was wondering if it was common practice for a Gp to describe pain killer without seeking a formal diagnosis can your Gp just diagnosis an give you meds to help symptoms.
I am asking this as a have emotional issues and have a formal diagnosis for that but l,find that my Gp is sometime dismissive of other physical issues and connects everything to my mental health
I was wondering if anyone could share there experiences of trying to get a formal diagnosis and receive support in managing the symptom.
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Shanpa69
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Hi, welcome into the community the first thing is you are not alone finding a way of coping with the illness along with how a number of doctors treat the condition.
The Naproxen are a slow release anti inflammatory that may take some time before some relief from pain is felt, I am not a doctor but I was prescribed a stomach protector with Naproxen I hope you have also had this and follow the advice they should be taken with food.
With this condition many are sensitive to side effects so starting low then moving up is the safest way of finding symptom relief without doing harm as we are all individuals that will work with our doctors in the search for treatment we can tolerate the side effects of.
Thanks for your kind responds Ian123 the doctor has not prescribed anything to protect my stomach but the chemist was very good at telling to take with food. Which l have done don't need any further complication 😥 back at the Gp next week just have to see how it goes thanks again
Hi! Sorry you're going thru all of that. That's a lot to bare. Can you see a rheumatologist? My gp wouldn't diagnose me. He wanted me to go to to a rheumatologist. So I did. And very happy I did. She ran so many tests - to check for rheumatoid arthritis & lupus along with some other things. Diagnosed with Fibromyalgia. I take neurontin which was prescribed by my gastro (I also have ulcerative colitis/crohn's) for severe back pain. I think that med keeps my pain under control. Plus I'm on entocort for gastro issues but it helps with inflammation. That was given to me to help with joint pain which for me is an incredible med! Fibro symptoms for me = pain in muscles, fibro fog/short term memory issues, can't speak correctly often, exhausted, insomnia, numbness/tingling & much more - fibro fog moment - can't think of all of the other symptoms! Arghhh!! Recently I've discovered some interesting findings - that mold, especially black mold (mycotoxins) can trigger fibro to start. I was around mold (unknown to me) for a couple more years in our home & that's when everything started to go haywire. Over the on couple of years it's become pretty much disabling. So I think I'm on to something with the mold... Dr's that are so dismissive of our symptoms don't deserve our time. So if you can get to a rheumatologist I definitely recommend it.
Thanks Michelle for taking the time to leave me such a detail reflection of your experiences and you current conditions. I wanted to ask for a referral to a rhumologist but have felt anxious about what the GP may say and respond I have to try as the pain and symptoms are now having an impact on me take care and thank you for you thoughtful insight especially as you are managing so much ☺️
Hi there, not all GP's will refer you to a rheumatologist. Fibro is usually diagnosed once a lot of other things have been ruled out and a pressure point test carried out. My GP diagnosed me and there are others who have also been diagnosed by a GP. There was a survey on here about this at some point last year I think.
As Ian has said we are all different and there is a wide range of meds that can be prescribed to help with fibro, many of which are also prescribed for other conditions unrelated to fibro. The best thing to do is to keep a diary of your symptoms and take that with you to your GP when you go. That will let them see how well or if the medication is working. Good luck, Linda.
Thanks Linda the idea of the diary is a good ideas as when as when l do get to the doctor l always feel overwhelmed with all the symptoms l have experienced you take care too 😏
Hi, it took ages for me to be diagnosed and to get the definite diagnosis I have had to pay privately to see a rheumatologist but I'm glad I did. I would ask straight out for a referral to a rheumatologist, once you have the diagnosis things can move forward.
After doing the school run, getting home, closing the front door and lying on the floor crying in pain I had to ask a friend to take my daughter in the mornings and she goes to after school club until my partner can pick up, I do have other mobility issues too though. I have learnt to try and make life as easy as possible until the pain is under control, is there anyone else who can do the school run for you for a while?? I do feel guilty about it but it can't be helped at the moment,
Hi it's nice to hear from another mum who can relate to the school run experience as l often cry in the morning when l have to get my stiff body down to the school which is not to far but feels miles away .. It's difficult as l am a single parent with very limited family support and my daughter as her own anxiety issues and like me to pick her up at 3.30 we tried after school club but daughter had a bad episode of stomach cramps and l had a week of dragging myself to the school in pain to pick her up.
I do need to look at other options for support thanks for your insight as it helps me to stop feeling so alone
I share that feeling of feeling guilty with my three kids and now the lack of energy, the dum moments when my brain doesn't work, just try to think ok at the moment I can't do this but later I will share a nice conversation, a meal a story....No point feeling guilty it makes us feeling worse.
Just think of things you can do with your child that are not physical, a good listener goes a long way.... hope this helps.x Look after yourself, you are the only who can and don't feel guilty, you can't help it !
I just wanted to reply as feel I am in the same boat, I have a history of depression and anxiety and feel it is being put down to that although she did say it sounds like fibromyalgia. My GP thinks the CBT I'm doing for anxiety may 'help me with my pains too' and I'm a bit hmm. I can see it may help with the emotions due to the illness perhaps. It's tricky. I did mention a referral to a rheumatologist, but it hasn't happened yet. However she has done bloods and came back with low Vitamin D and iron stores so I think i might bring along some stuff I found about how that can be linked with fibro, next time I go.
We sound like our experiences are very similar I have low vitamin D too but have been visiting the GP for single illness such as tinnitus pains in my stomach suspect an ulcer. Problems with my heel had see a foot doctor but feet still very painful. I hope your GP does a referral to a rhumologist as that is what l would like too this is very stressful which does not help the pain we are experiencing good luck and take care
I ended up writing a note to the GP listing the symptoms and asking if it could be fibro and possibly for a referral. Yes it's tricky, I did my CBT today. After it's finished I'll then go back to the GP. I don't want to keep going in to see the GP as they might think I'm being over anxious!
CBT is highly recommended for several chronic pain conditions - I did have 6 months access online to e therapist - it was helpful at the time although it was approaching summer last year and I'm sure that was one reason why I was feeling better anyway, I've gone "downhill" this winter but I am able to take up CBT again if I want to. I think getting the right therapist is crucial, I spoke to someone over a webcam, I'd have no interest attending a class. good luck if you give it a try. x
I found, and still find, it difficult to describe my many symptoms. I told a Consultant this once and he said when it comes to Dr's and symptoms explaining try hard to not say more than 5, ie pick the worst 5....crazy huh... but he said beyond this Dr's will glaze over. He was a really genuine man and was serious.
I have listed symptoms (way more than 5!) and handed to Dr's. 99% I have had to strongly insist the Dr reads it before discussion but it doesn't do well for relations tbh. Other problem is brain fog in consultations!!😢.
Back to the point.... sorry... I am diagnosed, by a Consultant, CFS/ME, after massive amounts of testing, MRI's etc. The pain came later. My gp diagnosed FM saying he is confident to do this due to your tests.
There was a discussion here too of a new method that may be used for dx of fibro instead of tender points. I think relying on that alone is still considered controversial by most fibromytes, but IDK that for sure. Here's an article you can look at:
As for Naprosyn, it might work but your pain sounds a bit extreme just for a nonsteroidal anti-inflammatory. My GP didn't diagnose me with fibro but sent me to a pain specialist. However the GP did first give me something for pain - hydrocodone. I found that using it with naprosyn made it work better. By itself it doesn't do enough for my pain. Gabapentin helped but still didn't treat all the pain.
But not only do stomach side effects possibly occur (it's really just a stronger aspirin or ibuprofen), but you need to get kidney labs after using it for awhile, though that my be after quite a while. I had kidney problems due to one med I'd been taking a long time and had to quit the Naprosyn.
I sincerely hope that you are feeling as well as you possibly can be 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. I have pasted you a link to our mother site, FibroAction which hosts loads of useful Fibro information:
As many of the others have said to you, getting a referral to a Rheumatologist could be a good start? I would also enquire about physiotherapy as a routine of slow gentle exercises could help also? I want to wish you all the best of luck and I sincerely hope that you find the answers that you so desperately desire and deserve.
My GP did a whole host of blood test, everything came back fine, the thing is the blood tests are only to eliminate what you don't have, as there is not a blood test to identify Fibro, my GP referred me to rheumatology where the specialist nurse asked me my pain symptoms & to score pain level 1 to 10. That was 20 years ago when not much was known about Fibromyalgia! at that time there were 15 pain points of which I had 13, I was precribed diclofenac/Voltarol which I took 3 x daily for 8 years I was not pain free the pain level was pretty much the same jyst the pain type had changed, so I decided to come of the tablets, I have been off them about 10 years now, still suffering pain but gave learned to luve with it, adapted my lifestyle to Fibromyalgia, housework, do a little & rest yoyr body will let you know what & how much to do, listen to your body, do not try & push through as that will only set you back!!! what I do for relief is go to the swimming pool as water supports the muscles & joints a great relief I just started walking up & down the pool as a little exercise I now swim 20 lengths with a break every 3 lengths, I go to 3 aqya aerobic classes a week, I explained to the instructor if my condition & said I would only do the exercise 's at a less vigorous level won't do something I felt was awkward for me they said that's fine as I was making an effort to be involved in the class, I can now do all exercise's except when raising arms above my head (obviously out of water lol) because of the pain relief & exercise I get at the pool has given me a bit more strength to cope at home more with housework!!! So try it it might help you, just to go back to the tablets I took (Diclofenac/Voltarol) has now been found to cause strokes & heart attacks & GP no longer prescribes it. The strongest thing I take is paracetamol & only on my worst days, my view is that there are so many toxins in medication that could be causing other possible health problems, fortunately my surgery has 2 new young forward thinging GP'S who actually agree if I can manage without tablets for as long as I can to go with that, they are also happy to refer me to hospital for 2nd opinion if I ask for it, bnowbut I have total confidence in them, that a 2nd opinion is not required, it was a different story with the now retired GP at that practice. Sorry I've gon on a bit, if your not sleeping yet, I wish you improved health & hope my info helps you in some way. gentle hugs xx
Hello Shanpa69, I'm so sorry that you have to go through this,and i think you should really push for refferral and tell the doctors that it affects you physically and emotionally and this amount of pain makes your life very hard to live. I was being referred to a rheumatologist 3 years ago but have had this condition since late teens.I'm 26 now I started to experience allodynia(skin pain) nerve pain throughout my whole body,and also vulvodynia so i was referred to a pain specialist i have difficulty dressing and anything that touches me hurts me, the cool wind makes my skin burn and sting horribly and even the pain doc cant get it under control,as i was living with severe muscle pain all over for years without help,it caused central sensitization and pain sensitization,they cant reverse this,please get the referral before its too late...My pain cannot be reversed now thats what my specialist says and he said he never met anyone who developed this kind of nerve pain from untreated fibromyalgia so sorry about the long story but i dont want you to get worse be persistent and get them reffer you its you that hurt not them...If the gps had this condition believe me they would reffer themselves to everywhere..Get better soon.Take care and gentle hugs Loli xxx
Hi hun.i really do feel for you.this is such a horrible condition to have,i got diagnosed in may this this year, two months after open heart surgery,i had been to GP a few time with diffrent symtoms but it was dismissed as i have anxity and,depression and they put it down to that untill i see a rhumatologist who diagnosed me on the,second visit.when i walk the pains in my hips are unbearable, slepping is very restless and when i try to turn or get up its like a burning feeling then numbness down my legs.I would suggest asking for referal,dont give up untill you have diagnoses hun,change your doctor if your not happy.its soooo frustrating when you feel people are not lisening to you and try to put it down to depression etc.I do hope you get it sorted soon i wish you well.x
Thank you for your kind response l have been now referred to a rhumathologist and will be attending my second appointment on Monday l have been given a diagnosis with fibromyalgia but finding all the symptoms l am experiencing very overwhelming at the moment like you say the all over the body muscle pain is really getting to me and l am feeling really frustrated as l,have been having pain under my breastbone and lower abdominal area as well getting a GP to understand all your issues is so hard a my dr often does not listen and is dismissive as l have on-going mental health issues which l have been fighting to get help for. It's helpful to hear from other people who are experiencing similar issues l hope your coping as well as you can and the pain your experiencing eases a little take care
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