After months of back and forth with doctor telephone calls (only seen by someone once), my GP is going down the FM route (I guessed it could be this 10 months ago)
I was referred to neurology for muscle jerks/spasms but apparently this didn’t fit the criteria. I know FM is diagnosed when there is no other answer but was interested to know if anyone had to undergo any tests. Such as MRI’s, CT’s etc? I just feel like I’m being fobbed off by my doctors. I’m 25 years old with no quality of life because of pain and fatigue, I’m the lowest I’ve ever been, I know I need to be more demanding with my Doc but it’s so hard when they don’t listen. Thankyou for reading x
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TabSim12
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Hello, let me wish you a warm welcome to our group 😊 Scans are not the normal things a GP would have done if fibro was suspected. A Scan tends to be ordred if other things have been suspected or are urgently needed.
For example ive had two in my life time. One was for an head bleed. The other was for spinal problems.
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Hello and welcome, yes it does not seem too be an easy route too get a diagnosis sometimes, some doctors refer too rheumatologist, but keep pushing and hopefully they will refer you, it is annoying as many things are being done on a telephone call I have found lately. Could you take close relative along for an appointment for back up, someone who sees close up how life is for you at the moment. I have cfs which is very similar along side my fibro and that was hard too get diagnosed. And yes please get through too the doctor you are low as you want some answers and ways too help cope if diagnosed , take care , keep us posted xx
I was given blood tests to rule out other illnesses such as Rheumatoid Arthritis etc. I was also given a mammography because of where one area of pain was and an MRI scan because of my severe back pain. The blood tests and mammograph were fortunately clear. The MRi showed Degeneration of the spine which explained one sort of pain that I had in my back but not the other sort which was then put down to fibromyalgia. Hooe thus helps.x
Thankyou for your support! I’ve literally had no contact with the GP, they just text me back🤣🤣 I’ve just been referred to rheumatology so I’m hoping I’ll get somewhere! It’s just the waiting game as I would have been waiting 13/14 months come my endocrinologist appt in feb! Xx
Yes I know the waiting game. I was referred to the Pain Clinic the October before last and eventually got a zoom call in March. I was promised 4 different treatments one of which I should have onky had to wait 2 months for and so far have had none of them. I had a letter saying that due to the back log with Covid they had no appointments.. I guess I will e,eat to my own devices.x
I’m so sorry you’ve been messed around! I get that the NHS are under a lot of pressure but in the same respect, they’re not the ones living like this! I used to be so active; going to the gym and doing fun things. I literally go to bed at 7pm and decline most invites to going out, it’s no way to live xx
Same here used to swim twice a week, all in all would do 35-40 lengths each time, would walk the dog an hour w day, work and do all the housework and manage a large garden. I now have a tiny garden, just walk my rescue dog for half an hour slow walk on a flat park and struggle with everything. Went out last night for the first time in months for a meal and if I had driven myself there instead of having a lift I would have come home after the first course. Had to be helped in and out of the car. I try to stay up until 9 but it is a struggle and only get snatches of sleep.
It is amazing how our lives have been turned around. I do try and get the best I can out of life but had so many plans for retirement. I know there are so many people much worse off but some days it is difficult to cope. I am lucky to have a husband but his health is poor. The rescue dog has a gammy leg so I joke that at least we three don't spoil another family.x
To me it sounds like ur GP doesn't really want to use the surgery's budget in trying to find out exactly what is wrong with U & to treat U accordingly .
Have U had any other tests or referral to a specialist to see what the root issue is & what can be done to help U either get better or live ur life with this going on .
Personally speak my GP is good at sending me for checkups & tests . He even referred me to the pain management team twice over 6 years , first time I went there , there wasn't much that could be done as they tried to treat the pain but with fibromyalgia it's not just the pain & so over the years they've developed a new way of treating those with never ending pain & that is physical but more focus on the mental side of it too . I finished a 10 week course about 3 weeks ago & in the new year I will be attending what I can only call exercise regimen & techniques as its very low impact with special focus on sitting down .
There will also be a group meeting where we focus more on the mental wellbeing & we get to put things forward that may be incorporated. I'm just glad that mental health & wellbeing is being put at the fore of healing . I wish U luck in getting an answer
Thankyou! Either my GP doesn’t get back to me or they’ll half heartedly refer me for some BS! I’m awaiting an endocrinology appt in feb! But this has been going on for about a year now! So will be 13/14 months come feb! I just had some blood tests which showed marginally high inflammatory markers so have now been referred for rheumatology but again this will be a waiting game! They just fob me off with pills and haven’t actually done a full MOT as it were, I know I’m not a doctor but my worst fear is it being something internal and not being referred for the right things, it’s eating away at me and I feel more and more weak as the days go by. I don’t know much about group therapy but also didn’t want to get to that point as I haven’t had a diagnosis! This is pretty much all my own research so far. I just feel really alone in this. Thankyou for your support xx
I'm happy to support U & anyone else who needs it. I would suggest that U don't let them get away with fobbing U off , I will say with this back log don't get upset if they delay ur appointment next year.
Most of the time scans are inappropriate for fibro diagnosis as the pain moves around. Also because you are young they wouldn't expect you to have wear and tear on your skeleton yet that a scan might show up, I was a little younger than you when I was diagnosed. I found an article about the condition and took it to the GP and said "I think I have this" and they agreed and that was that. I've always found doctors completely disinterested when it come to fibro, it was years before I saw a rheumatologist but to be honest my bloods showed nothing so as far as they were concerned it had to be fibro. Try not to worry, having unexplained chronic pain is not as unusual as you might think sadly.
I was just unsure as all the information I’d collected said that scans were often done to rule out other things. They won’t prescribe me anything because I don’t have a diagnosis which just makes it harder to get around day to day, Thankyou for your support xx
I don't take any meds for my fibro as I find they don't help enough to put up with the side effects. Not responding to pain meds is a feature of fibromyalgia so it is not uncommon to have no meds. However when I was first diagnosed the NICE guidance hadn't ruled against pain meds for fibro, as it has now, so I was put on a few before I stopped taking them. Which at least made it my decision to not have meds as opposed to a GP's which makes you feel more in control of your condition at least. So I understand how depressing/frustrating it must be for you. The only meds you'll probably be offered are anti-depressant type meds like Duloxitine which have been found to help some people.
If I were you I would think about writing a letter to the practise manager at your GP's. They can't ignore a letter apparently. Really it shouldn't be a long process diagnosing fibro, generally they need to rule out any autoimmune conditions it could be first and then that would be that. However if they have booked you an appointment with a rheumatologist it is unlikely the GP's will want to do anything before they get their report, especially if you have slightly raised immune markers.
I'm always amazed at people who are given scans bc they have never been offered to me in 30 odd years of having fibro, but then I think being young is most likely the reason. That an data from the American system who get more scans than us in the UK generally.
I think it is a good step your gp is taking, like going for the extra mile either to outrule things or they might see things related to neurological symptoms
they’re not going the extra mile🤣 they’ve made me do about 8 blood tests in the last month! I have these muscle spasms/jerks which look like tics but I was told it wouldn’t be a pinched nerve so is why she referred me to neuro but it got denied
I was referred to a nuero because of muscle spasms a well as other things. Have been diagnosed with fibro for approx 20 years. Neuro came up with nothing !
Welcome to the fibro family. Yes before I was diagnosed with fibro I had 3 mri scans, literally visited all the departments in the hospital apart from Podiatry lol! The worst thing they did was stick needles all the way up my feet n legs n passed a current through. Then measured between the dots. The first zap made me fly off the table lol! When he kept zapping my left leg I won’t lie I was thinking about where I could stick that current n hurt him. Apparently they did that to check my pain levels. Can’t remember what it was called but advise fibro peeps to say no to that one. This was all as I had spinal degeneration n was in agony! They couldn’t understand why i was crippled up in pain but after my neurosurgery aha… they discovered I had fibro alongside the other health rubbish. So stick with it as fibro is one bad ass crazy thing n the doctors don’t understand it as well as we do. Gentle hugs 😊🤗
I was in my early 30’s and I was literally scanned from head to toe during the rule out process of everything else for the fibromyalgia and CFS diagnosis. It has been 30yrs now been involved in 3 research studies the last one did the FM/a blood test which came back positive so that gave me something on paper saying this isn’t a catch all nor in your head diagnosis but it is a real diagnosis. Which brings along other symptoms and diseases along the way. So be prepared. My advice is get involved in as many research studies as you can or come across. They build on one another and one day hopefully will lead to a cure.
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