Mourning who you were before diagnosis

I am 34 weeks in and still waiting....,I haven't heard a peep, must be in a non urgent pile in the NHS.I was in hospital with Radiculopathy and slipped disc after falling over and neurology did tests when I was 2 1/2 weeks in hospital. I had fallen previously and spent 2 nights in another hospital. I did an emg after my release which found chronic neurogenic changes in right vastus medialis which is from the Radiculopathy but at this time last September neurology didn't know of my new fibromyalgia diagnosis. The letter on my discharge said I would be seen in clinic in due course. 😳I still don't think they know of my fibromyalgia and recent fall and low speed RTA with lorry.
They have probably took one look at my medical records and run a mile.
I have been through most hospital departments because I have been so unwell searching for an answer. I was definitely a different person more than 5 yrs ago and the contrast is vast. You are right to feel how you do as it's damn hard for people without fibromyalgia to understand. I think just one day in our bodies would make them more understanding. I was even told by my GP that they didn't have the capacity to sort me out when I had a serious reaction on my pregabalin and amtripuline, I was stuttering my words very badly. I was told to go to north Middlesex walk in centre which didn't exist and is apparently being built. I only wanted advice on whether I should reduce meds, instead spent ages in A and E only to be told I was correct in believing rare reaction to tablets and I could reduce them. I mourn perhaps for the NHS as with all these new things being added to my medical records you would expect someone would hurry up my neurology appointment but the different departments don't seem to communicate. I told my GP about the RTA and falling in my garden and no one seems to cotton on that this could have damaged my back more . I am beginning to think my Fibromyalgia diagnosis means," ah she's ok just chronic pain so needs tablets treatment ."
I think I am mourning the old me that didn't need to go to GP / hospital for help.Actually looking at how I feel I think I am becoming less positive each and every day.
This illness plus any others that we might have really starts to drag us down the longer it goes on.
I just hope there's a miracle and someone wakes up to help us all.xxx

I have just counted the weeks waiting for my neurology appointment after discharge from hospital last September, it's actually 36 weeks. I had a letter stating I would be seen in clinic in due course. At that time they knew of my moderate slipped disc and Radiculopathy and chronic neurogenic changes in right vastus medialis but wouldn't have known about my fibromyalgia diagnosis and now my low speed rta with lorry and falling onto my face ,( again.) I have a documented 3/5 strength in my right leg so it explains along with the pregabalin/amtripuline that I am now at risk of falling in my updated medical records. I am beginning to think before fibromyalgia came along doctor would look at medical records and be more interested at sorting you out. I definitely miss pre fibromyalgia that part where doctors were on your case, actively trying to find out the cause. When there's a fibromyalgia diagnosis on your medical records that seems to cover everything and you feel like all the other bits going wrong are forgotten about.
It's vastly different pre fibromyalgia diagnosis and post, especially when waiting to hear from hospital departments......
Good luck to everyone dealing with other problems along with fibromyalgia.
I am mourning the loss of the old me as it seemed much quicker and easier to sort me out before the fibromyalgia reared it's ugly head...
Best wishes to everyone, I hope today is a good one,
Guineapigs lover.x

@guineapiglover Wow. SOCIALIZED MEDICINE might be cheap— but so is the care! Do you have osteopaths or naturopaths over there? They understand better. Social media support groups know a hell of a lot more about Fibromyalgia than 90% of doctors. I’m sorry. I mourn my normal mind-body all the time. But looking back makes it worse. This is where counseling/therapy helps. I hope you have a support system. My church and God help me know that there is hope and our job is to help others. We know pain— and there are many people suffering who need our encouragement, empathy and prayers. Lyrica is supposed to only be used very short term. It’s a dangerous psychotropic drug that rewires your brain causing memory loss. It must be very gradually stopped. ( like half a year.)

Gosh, thanks for this. I must admit I am getting forgetful on pregabalin and amtripuline. My GP hasn't got the time to look after someone with fibromyalgia , and they forget there are other issues. The NHS here isn't as good as it used to be and it's so disconnected, the different departments don't speak to each other and I have to repeat my medical history every time I speak to someone. Yes we do have osteopaths but I have been too tired to investigate anything and muddle on. I am the only person with fibromyalgia that I know so I am relying on my referral to a pain clinic. Not sure how long the waiting list is but I have been on it a very long time.....
I am a Catholic and go to church weekly and I know God is in control and knows our suffering, Jesus suffered much more. I am in pain every day but try and put it in perspective. Perhaps this is my cross to bear, it might strengthen me in my suffering.
Thanks for your words of encouragement, I do feel rather alone at the moment. I am perhaps the only English person to have said negative things about our wonderful national health service. It's not all that bad but at the moment it's not working for me so thanks for making me rethink my options.x
Best wishes
Mary ( guinea pig lover)

Yes. But don't give up because there are things which may be "fixable." I just fixed gout - not knowing I had it as an ongoing inflammatory disease for 30 years. Simple blood/urine test. I sure it was responsible for my fibromyalgia diagnosis! At 69 I feel 39.... only took 30 years. I had a lot of joint replacements too, but the gout meds changed my daily sense of pain and fatigue.

I definitely do! My biggest frustration is those that don’t have fibromyalgia are totally clueless, especially those that are closest to me - family, friends, coworkers.

I think I have had fibro since I was sexually abused as a small child. There were times it was better or worse but it’s always there.

I’m 75 now and feel like I am finally starting to be more in control. I have believed in healthy living and good quality supplements since I got married. My kids joke about the peanut butter and alfalfa sprouts sandwiches I sent them to school with. When my mom came to visit she brought green peppers for treats as they were too expensive to boy.

I still have both kidneys but every other expendable organ in my body has been removed to fix my health issues. In the early 90’s I read an article about fibromyalgia and I took it to my Dr. I was sent to a Rheumatologist who finally diagnosed me with fibro.

I have since started seeing an incredible female Dr who gets it, who believes me and helps me with referrals to appropriate specialists.

When I read some of your posts it hurts me that people are still having to fight for help. Pain is just a part of who I am and I try hard not to let it control my life. Friends and family ask are you really in pain all the time? And unfortunately my answer is still yes. They just can’t believe that someone can live like we do. As long as I can keep in a good place mentally I can get through the days. I do that through counselling. When I get depressed it’s so hard. My son understands as he has his own issues. My husband and daughter wish I didn’t have to take all the meds I do. They say if I still have pain with all the meds they must not be working and I should stop taking them. I get that their frustration comes from love but it isn’t helpful. My hope for each one of you is that you can get where I am or better so you can live a life filled with beautiful memories like I have. My brother is dying and that makes me realize that I have to try to really live for as long as I have!

I feel your pain and I send you my positive thoughts and prayers. Elaine

@coryl I too believe the sexual abuse and abandonment I experienced as a child has something to do with the fibromyalgia and everything else thats negative in my life. As much as I try to leave it behind , the body remembers. The fibromyalgia is probably as best as it’s been lately but yes I have pain every day off and on, somewhere. And I’m tired and become exhausted and overwhelmed easily. I am 66 years old. Don’t feel like doing anything but push myself to do what is necessary. Many are worse off than I am so I shouldn’t be complaining. Many that are worse than me have a better life too, than I do. I took myself off the Cymbalta and gabapentin because of the cognitive and memory problems I’m having and taking LDN which I think has helped. Also a new church I’m attending. Sorry just venting. This group is good for me. I wish you peace and love.

@jeannesf1 I got myself down form 60 mg of Cymbalta to 30 and then found out my oldest brother is dying. I would still like to get off it but now isn’t the time.

I switched from hydromorph to Suboxone through the pain clinic in Saskatoon in Canada just over a year ago. I am more alert and myself now. I am also slightly manic depressive and am dealing with that with a new counsellor. I am just so happy to chat with someone who understands. Thanks for your reply’🤗

Just to let everyone know, I did hear from the neurology team and I have an appointment on 1st September, just shy of waiting a year. The doctor's here from my experience vary . I am almost resigned to trying to carry on without help, but fibromyalgia really does have a before and after.Before fibromyalgia could do almost anything, now it's reared it's ugly head barely managing to work and sitting on the sofa most of the time. With my slipped disc and Radiculopathy and chronic neurogenic changes in right vastus medialis it has added another layer of stuff to deal with . I think doctors forget that. I also think the different departments here don't communicate and although my gp knows about my recent fall and low speed rta with lorry they haven't passed on information to the hospital.
There's a definite before and after,I mourn the old days before fibromyalgia .I could be seen quickly, investigation done etc and now with a fibromyalgia diagnosis everything has slowed up, everything seems to be fibromyalgia....