Hi all, only been suffering with fibro a couple of years got diagnosed last November. Like everyone else still suffering some days I don't think I can go one. Saw doctor last month,he told me to wait an see what the pain clinic and physio can do for me. Doctors been great up to now. ( even sent me to another rhumatologist after first hospital not helping.) Anyway went to pain clinic 2 hour information clinic and have asked for the assessment which they say has a 6 month waiting list with another 6 month wait for the 8 week course.I'm taking pregabalin 450mg a day at the moment it did help gradually going up .rhumatologist did ask him to put it up but doctor said I'm on the highest dose.
Sorry for going on fibro fog I keep getting confused with the question I'm asking. I think this is it
Does once your diagnosed with fibro everyone just wants to forget about helping you so you have to cope on your own medically and should I keep going back to my doctor. Is this a common thing.
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Slimjohn
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I personally believe there is so little understood about fibro and I also have autoimmune multiple autoimmune conditions that they fall under a banner of complicated and not enough research for their to be a real treatment plan.
I think it’s very much work thro different options of medications and if one not working as to try something else if after 12 weeks there is no major change. My GP And consultant believe if no change why be on it move on try another. It took 3-4yeRs to get to an ok place.
Now pain and sensory overload of fibro been going nuts so my GP did refer for pain management and talk therapy. I live I. A county where within 2 weeks I have had first pain assessment today and therapy assessment Fri.
I battle a lot with the system as I want my body to feel better or for there to be an even keel.
It’s hard going but I believe we must have hope and so I do as much as I can possibly do with the energy I have each day to research and try new ideas.
I know this does not help much maybe but just sending a virtual hug
If you don’t tell them how bad your pain is how can they help? You have too to get a better pain management going and only they can do this and therefore help you have a better quality of life.
Hi Slimjohn, it does certainly feel that way a lot of the time. You get a Label and that's it, there's no cure so I think many GP's genuinely don't know what to do with us when they can't fix us!
All they need to do is work with us, we know there's no magic pill to take all the pain, fatigue & foggy head away. We just need some help to live with it. So Yes, definitely keep on 'pestering'
We need research. It seems clear to me that it is something autoimmune when FM canimprove with the onset of another medical problem. I suppose the rewards for doing the research are not enticing enough.
Thanks wife thinks i should keep going back and doctors been great so far but as i said now rhumatologist has diagnosed fibro he seems unsure what to do next.Your right though i find the fatigue and foggy head worse than the pain and stiffness sometimes.
to be honest,I have been like it for 13 years and still have symptoms you have and I am on meds.I have other conditions so doctors just say that it could be to do with those or fibro.Yes no day is the same and I try to do what I can . If you get worse go back to rheumatologist and say you can’t cope and need more help
I really feel for you and the only comfort I can give to you is that I found the pain management program really helped me with pain and managing fibromyalgia. I don't know how your pain clinic works but I asked to be put on the cancellation list. As I did not work I was able to say if you get a cancellation then ring me I am prepared to come in on a day's notice.
Both my wife and I have attended the pain management program. I suffer from social anxiety and like you wondered about the group setting. I think you will find that the group will have very common problems and are very understanding. In many ways you learn from the group and the group learns from you. It's not just dealing about pain. Both my wife and I still keep in touch with group members.
Hi sweetie 🙂,Don't allow yourself to fall through the cracks as it's easy to do.
I'm sorry ur suffering🙁. I spent the weekend foggy headed. It's becoming constant. My poor carer has to test the waters in the morning to see if I can speak ok. Lol. It can take me ages to write a paragraph on here.
Any way fight for yourself!!! I know it's exhausting
But it will help you in the long run. Hugs🤗🤗sweetie. May you relax and write a list of what you need to say to your Doctor.🤗🤗🤗Dawn x
ThanksI find i have to write lists for eveything not so much day to day stuff but definitely if im at the doctors or the wife wants me to look stuff up for her. This site and the community helps alot .
I’m feeling the same lately. I’ve had such horrible experiences with doctors recently that it’s put me off going back to them for help. I’m on the waiting list for pain management programme. I’m just hoping I’ll feel a bit better when the weather gets warmer. This forum helps to know that others are in the same boat x
In my experience you get forgotten. You have to shout out loud to them FREQUENTLY!! Symptoms of fibromyalgia in my teenage years, diagnosed at 58! More pain, two heart attacks, shouted louder as more symptoms. Got discharged off of Cardiology and Rheumatology lists. Shouted much louder, reported the Rheumatologist to PALS. Diagnosed with Ankylosing Spondylitis at 64 additional to fibromyalgia. No. The system DOES NOT WORK. Not in London anyway
Drs are not very understanding where I live have had to change the drs surgery as the other drs were useless he said to me wgat do you want me to do about it when I said I am still in a lot of pain he was not very nice and didn't have a clue about pain management came out of there in tears changed to another surgery where the drs there are very helpful and are trying me with different pain medication
Hi My doctors been great even to the point the local rheumatology clinic only saw me once in a year and put me back on prednisolone for another 6 months. Doctor then discided to refer me to a differant hospital they were great appointment in 4 weeks and after many xrays blood tests and mri scans another 2 more appointments she made the diagnosis.with referrals to pain clinic and physio. The issue now is my doctor seems reluctant to offer me any other options.
When i saw him last he said lets wait and see what the pain clinic can do for you
I am sorry, but there is no known cure for FM. Now that you have been diagnosed, it means you haven't got something else (discovered by elimination). All you can do is keep taking whatever works for you, be kind to yourself, get help if you need it, and wait until you get something else wrong, like osteoarthritis, or even (as is now the case with my plumber's wife) a nasty flu-like bug and she takes medical cannabis. I take pregabalin, which is great, but we all agree that a proper night's sleep is the most important thing.
Thanks I also take pregabalin it had helped i know if i forget to take 1. Seems osteoarthritis comes with fibro got that also as well as age related rotor cuff tare. Bulging disc's in my spine. All things they found while trying to diagnose what wrong with me. Forgotten what a good nights sleep is
Since finding this community and reading everyones struggles helps
I have six or seven compression fractures, so it's almost "snap" to your bulging discs. I don't know which is more painful; some people have no pain with fractures! I'm surprised they found all those things while trying to diagnose you because back in the day I only remember having blood tests. I have a problem with my wrist that is historical but is slowly getting worse, so drying heavy plates/pots can be a problem. Neurologist couldn't diagnose it but maybe he would be able to now. I am down to taking 150 Pregabalin before bed and I sleep. I really sleep like I haven't since I was about 10. You probably need to take more. I didn't know OA comes with FM, as it's to do with the bones and cartilage.
Reading other people's journeys I feel quite lucky that it's only taken 2 years to get diagnosed.that was only after first rheumatologist was not doing much so doctor sent me to another hospital they were great sent for xrays ,blood tests and mri formula spine .shoulders 2 different appoint ments Im currently taking 225 pregabalin twice a day it helps I know if I miss one.. its also the foggy brain I've started talking rubbish to my wife but think it's right. I go into rooms and don't remember what I wanted.
I don't get any real pain in my lower back but rheumatologist thinks the disc issue is causing my numbness and pins and needles that I get she suggested that I don't try and lift anything really heavy and strain.
My doctor suggested the pain clinic . Had to wait 6 months for a phone call from my local nhs clinic only to be told i had sleep apnea and they could not help. He referred me to another rhumatologist in a hospital out of my area and they referred me waited 3 weeks to have an appointment about what they can do. Now having to wait for an assessment to see if they can help and do the 8 week course. Not even sure if it will work to be honest. Ask your doctor if they might refer you to one
After reading your message, I can totally understand your feelings. I had fibromyalgia for the last 20 years, and over that period, I got to understand how this illness affects everything in your body /mindset and family life and much more. I had to push hard to get help from the pain clinic and long-term illness courses available about living with pain. get involved with health minds, they are there to help you. Talk to your GP and ask them about anything that will support you to help yourself in understanding how to change your lifestyle or even your diet. Understanding this Inflammatory condition is so important. I finished the pain clinic workshops in February and can confirm these teams really did help me . There's help out there but also long waiting list however don't let that put you off because you will benefit in the end.
GP do not Volunteer this information you have to ask .sad but true. Good luck 👍 keep pushing It Will happen ..
Thanks for reaching out and the information. Will definitely ask the doctor if he can send me anywhere else that can help.I was very iffy about the pain clinc but only been hearing great things from the community so will definitely give it ago if excepted.
I too didn't think they could help me . They made me take a look at myself they go through your mindset and talk about pain and tips to help you out of it. There's a lot they do behind the scenes with helping you. I attend three courses which have helped me help myself.. they listen which is key. I would do all of them courses again because they gave me challenges I didn't think I could do. Good luck and big hug because you will get there.. take care 🙂
Hi, I also have fibromyalgia. My doctor has been quite good in referring me to pain clinic and trying different medications. I also see a chronic pain therapist who is good, though of course it doesn't stop the pain and other symptoms. I mostly just deal with it all as best as I can now. I didn't realise there were so many symptoms though! I take codeine for pain which helps a bit; hot baths, hot stone massage, gentle yoga, gentle walking, resting when I need to, writing my thoughts down, all helps to deal with it. Probably the same stuff everyone advises! Weed helps. And say no to things so young under pressure all the time. I'm sorry I can't be more help and I send you loads of good wishes
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