Do I have fibro?

[Deejay02]

Hi all

I don't know if this is the right place to ask but am at my wits end!

I suffered a minor rta several years ago and had whiplash and a prolapsed disc L5S1.

I have had physio and acupuncture, and am under an orthopaedic and pain consultant. I recently had a selective lumber nerve block that was unsuccessful and am due to have another before Christmas along with facet joint injections, and am also on the waiting list to have a nerve decompression operation next spring. This is despite my recent MRI showing no narrowing of the nerve canal, but my orthopaedic consultant has suggested it due to the amount of pain I have in my lower back, buttocks and travelling down my right leg. I also suffer from severe back spasms and neck and shoulder pain. Last week I visited the GP (not my usual one) as the pain in my neck and shoulders are so bad that each time I turn my head there are loud cracking sounds.

I also suffer from headaches, numbness and tingling sensations in my right hand, extreme exhaustion (some days I will sleep 18-20 hours), fatigue (doing light housework can make me fall asleep for 3 hours), concentration problems, I forget words when having a conversation and also forget what I am saying mid sentence, dizziness and am clumsy.

I have for the last 18 months blamed it on my medication. I currently take daily:- 2 x 15mg MSD, 9 x 300mg gabapentin, 1 x 25mg amitriptiline, 3 x 2mg diazepam, 8 x zapain, and I have oramorph as a PRN.

I was looking on the web for ways to ease my pain, when I came across this site, and so many of my symptoms point to fibro.

Are these symptoms fibro or a result of the medication, although this has been stable since April, except for amitriptiline which was increased last week from 10mg to 25mg. This was increased because of the pain in my neck and shoulder and to help me sleep as I tend to wake every 20-30mins as each time I move the pain wakes me. He also wanted to increase the gabapentin to 12 tablets which I refused.

I guess my pain concern is could I possibly be going under unnecessary spinal surgery when I have infact my have fibro? I want to see my GP about this in the week but I am unsure as to how I approach the subject?

Any help or advice would be most welcome and thank you for taking the time to read this, I hope I have made sense.

Deejay Female 33 feeling 93!!

[secondhandrose2]

Hi

None of us can diagnose you for sure, but the pattern of a trauma dnt then the symp[toms you describe is very typical for fibro particularly when the injury is whiplash - you may find it helpful to look on youtube at the videos made by Jonathon Kuttner who is an aussie consultant who specialises and lectures in fibro.

I couldn't say whether the surgery is necessary but you could ask to be referred to a rheumatologist for a diagnosis of fibro and also talk with the spinal consultant (ortho?) about the surgery - I doubt they would do it if it was not necessary, usually it's hard to get surgery and it is a last resort. But getting a firm diagnosis for fibro and then discussing with the surgeon should sort things out for you.

Suex

[Deejay02 in reply to secondhandrose2]

Hi and thanks for your reply.

My consultant said the surgery was up to me as it may provide some relief but only gave me a 50% chance of success. I think they are at the last resort as all other methods have failed, and they want to keep increasing the meds when I want them decreased! The notion that my symptoms being related to something else has never been explored, and I think this is mostly to do with inconsistency of my healthcare professionals. I've had 4 orthopaedic (spinal) consultants, 2 pain consultants, 4 pain nurses, and 6 GPs (as it's pot luck who is available when I need an appointment). I can mention symptoms to when professional, but when I see another what I've said previously has not been documented in my notes.

I'm afraid that if I see my GP with my suggestion will I be seen as one of those patients who has googled to much and made her own diagnosis which is completely wrong or will I be taken seriously?

Would it be a good idea to document what's been happening, who I've told what and when and ask that it may be ruled out for my own piece of mind? As I know I will go in and forget half of what I was planning to say!

Half of me would like me to be right, and that all this pain is not in my head, and I'm not losing the plot as I feel at times, and that I don't have to go through spinal surgery and the associated risks. Yet the other half wants me to be wrong as the thought of there being no end to this pain is heart breaking.

Whether it is or is not, my heart goes out to all of you that are diagnosed as I feel so much empathy for you all.

In the last 12 months I've lost a lot of friends as I'm no longer social and have also lost my partner of 13 years as my symptoms placed so much strain on our relationship. It's hard to explain to him and my family exactly how unwell I feel as I look fine on the outside. My children have also lost their fun, energetic mum, to a sleeping medicated zombie (that is their description not mine!!)

Sorry if i am having a whinge but feel that I need to say this to someone even if no one reads this!!

Thank you

Deejay

[flowerpower66 in reply to Deejay02]

AW Deejay you are not whinging, you are clearly not well and we all know how that feels.x you are on a lot of medication but sounds like you need it. I can't seem to tolerate any of the medications as they make me feel worse, (almost like I'm allurgic to them). I was backwards and forwards to Dr for 8 months and was diagnosed by rheumatologist as having fibro so might be worth asking to see rheumatologist before you make your decision. Good luck.x Michelle

[Hidden in reply to Deejay02]

You winge as much as you like, we all need to just let it out and say what we are thinking from time to time.

i am not an expert but it is possible to have fibro and other problems so you could be having symptoms from more than one problem.

The golden rule with fibro is to always write things down, our memories on some days is none existent.

Our mother site, fibroaction has lots of information. The link is fibroaction.org

Dr Jonathon Kuttner`s videos are very interesting and he explains thing in an easy to understand way. They are however a couple of years old so maybe a bit out of date. I dont know for sure as it has been quite a while since i watched them,

The link lifeafterpain.com/info/fibromyalgia should take you onto it.

Keep in touch hugs sue.

Sorry i cant get the link to come up, you should be able to type it in.

[secondhandrose2 in reply to Hidden]

Yes, the videos are old and I don't actually like them but they are useful for people who don't know the basics because he starts at the level of the nervous system and does bring in most of the current thinking about fibro, though on meds he is out of date and of course it is all in Australia.

[Hidden in reply to secondhandrose2]

I think that they are great and it was where i learnt a lot about fibro. I just think that any one new should be aware that some bits may be out of date. and i am glad that you have brought them up. I had forgotten them.

Oh and i thought he was from New Zealand? But maybe not.

I am a bit foggy at the mo.

hugs sue xx

[secondhandrose2 in reply to Deejay02]

In order to get diagnosed with fibro which I was fairly sure I had I first researched fibro fairly thoroughly and then very briefly documented my entire developmental history. By that I mean all the things that were likely to link in to the symptoms I was getting. I knew about the link between fibro and stress/trauma/viruses and so listed those and also listed any joint symptoms or other symptoms relating to fibro, all in chronological order, e.g..

5-11yrs double jointed, complained my legs hurt when walking,

11-16 isolated and bullied at school and home, abused by relative

30yrs sciatica following birth of heavy baby

40yrs pain in knees following fall

60yrs 7ft head first fall

61yrs muscle cramps, dizziness and fatigue began...

Those are just examples, my history was a page long in total. I took it to an appointment with the rheumatologist and he said I had a typical history and cluster of symptoms of someone with fibro. He didn't test me for trigger points because I had pain in all different parts of my body. He also diagnosed arthritis (possibly inflammatory) and hypermobility syndrome which is the name for double-jointedness, people who are double jointed tend to develop joint problems.

He didn't prescribe any treatment at all but just having the diagnosis was helpful as it enabled me to feel my own view was validated and now when I see the GP I am believed. I also joined the local fibromyalgia support group (see FMUK website to find your local one).

Suex

[Deejay02]

Thank you everyone your input helps so much.

Sue you mentioned an interesting point about being double jointed- so am I. When I was around 6 I kept complaining of leg pain, I would often cry in the walk to and from school, it would radiate up my hips and into my pelvis region, yet by the time I would see the Dr a week or so later it would have subsided and they were unable to find a cause. After a while I gave up mentioning it as I was not beloved. This also co-insided with losing both my grandfathers (mum and dads fathers) within 6 days of each other. This led to their separation and I went to live with my grandmother.

Yes I too have a troublesome let's call it, history, and as I sit here and think and write, the more I remember of things I have blanked out. I think if I give my GP my list she'll send me straight to a psychiatrist lol. But it's definitely a list that I will start on, as just from memory there are a lot of patterns that are emerging.

Thank you everyone. I know I may not be a person with fibro, but this chat has helped me a lot and I will update you on my GP visit.

Hope you all keep well and safe this week

Hugs Deejay

[Deejay02 in reply to Deejay02]

Apologies for all the spelling mistakes- auto correction lol

[mindful579]

Hi Deejay21

It sure sounds it to me that you are about to join the best forum to ask if you are a sufferer of this horrid issue of FIBROMYALGIA. Your description of where your pain is ie: neck, shoulders, terrible back pain, legs and bum etc. plus the dreaded FIBRO-FOG of forgetting what you were talking about or how to spell. Are exactly what i experience and i am not on half the meds that you have been prescribed by your doctor. If you are seeing your doctor this week, simple ask him if he could send you to a consultant who specialises in Fibromyalgia. If you live in London, Guy's Hospital, which is a part of St Thomas, has a Professor Davis who specialises in Fibromyalgia and he works at Guy's Hospital. I hope I have been able to help you a little. Good Luck. Let s us know how you get on ok. Gently ((((Hugs)))) :-))

[TheAuthor]

Hi Deejay02

I am so sorry to read of all of the suffering that you have been forced to endure and I genuinely hope that you can find the answers that you so desperately desire and deserve.

I am not a doctor so I cannot say for sure, but what you have described sounds like several things happening at once. It could be Fibro? And / or other medical conditions? Plus also you are taking some very potent medications which have some very heavy side effects? I would really recommend a referral to a Rheumatologist to perform some tests to see if you have Fibro? Simple blood tests should be able to show if you have any issues with your drugs?

I want to wish you all the best of luck.

All my hopes and dreams for you

Ken

[Deejay02]

Thank you for your replies, it seems a small gesture but they mean so much. I guess you can all relate to that.

I live in the South Walea area, and I contacted my surgery this morning and requested an appointment with one female GP who has been amazing in the support she's given me, and listened whilst I cried after having to give up work (i am/was a learning and development manager and worked nationally). Unfortunately she was not available until mid December, so I am seeing another GP who has been fab the last 3 years in supporting me, but I don't cry as much with him lol.

The appointment is on the 20th Nov, and I have made a summery (5 pages lol) of what's has been happening and when, and who I have informed of the different symptoms when they have arisen. I am also in the process of doing a history of myself. I am amazed at the relationship between my pain and stressful/difficult periods in my life. I am going arm myself with this, along with a print out from the NHS website of the symptoms etc. present the info and wait for his reaction!

I mentioned this today to a friend who completely said no it can't be, and I showed my 14 year old son (who is aiming for med school ) and he said that it sounded exactly like me.

I know that it may not be fibro, it may be something else going on, or it could just be side affects of my meds (if the NHS in Wales is millions in deficit it's because of the amount of meds I have each month! Lol) but you know when you have that feeling that you've found the answer to a question that's been bothering you for so long. That's how I feel right now.

I'm waiting for my orthopaedic consultants secretary to phone me back with un update on when I'm going in for my second selective nerve block and facet joint injections. I'm still going to go ahead 'just incase' until I have a concoreate answer.

Sorry I'm moaning and whining again! My second day on the site and I've told you all more than I've told my family. It's easier

Can I ask how long it took for some of you to receive a diagnosis, and did you bring it up to your medical team or did they?

Many thanks all and I hope you've had a good day (I've been in horrendous pain and had to resort to the oramorph) sending you all a big hug

Deejay

[glochessum]

I have Fibro and can relate to all your symptoms. Good luck, I hope you get an answer soon.

[Rachel1973]

I to am double was double jointed as a child and still find my joints are hyper mobile. I also had a car accident and damaged my vertebrae at L5S1. After many appointments at physio my symptoms didn't really get any better. Eventually my orthopaedic surgeon decided to operate, as my nerve was compressed and caused me so much pain in my lower back, pelvic, buttocks, hips and both legs. However, I had joint pain all over and was terribly fatigued but I put that down to the pain and meds. I had a PLIF (Posterior Lumber Interbody Fusion) but the surgeon damaged my Dura and afterwards the pain only subsided in my legs (sciatica pain). The pain in my lower back got worse and no amount of physio, hydrotherapy was helping. He then went on to say that he would remove my coccyx and at that point I asked for a second opinion. I was sent to a pain specialist who put me on morphine sulphate and oramorph for intermittent pain, which did help slightly but it made me so drowsy. I've tried facet joint injections and even though it gave me some relief from my back pain, it only lasted 3 months and I was told you can only have 5 of these in your lifetime. I just feel like it gave me false hope, only for the pain to return and I was back to square one. At my second opinion with a neuro surgeon I was told that I should not of had the surgery, as you could imagine, made me feel so dispondant and frustrated. The neurosurgeon, then explained that to try to alleviate the pain, the screws needed to be removed now my vertebrae had fused but this couldn't be done because the scar tissue had fused with the metal work and I had a 20% success rate, which he told me was not worth going through it and ending up paraplegic.

It's been over ten years now and after lots more appointments I was told I just had to deal with it as it was never getting better. Over those years I developed many symptoms and was finally diagnosed with fibro but all the symptoms went back to the birth of my first child. I had a very traumatic birth at the age of 18 and nearly died giving birth. I then had my second child, who was faced up over and I had terrible pain in my hips, pelvis and lower back. I was always at the doctors with a variety of symptoms but was told the same thing, " it will take time to settle" . I was told that even 6 months after the birth. I was prescribed an antidepressant but things got worse. I called the doctor out and he proceeded to tell me it was all in my head and I was neurotic. He Then went on to say that if I didn't stop he would send me to a psychiatric hospital, which upset me even more. After trying to put up with the antidepressants my mum called them again and asked for a different doctor to come out. I then found a very understanding doctor and he told me I was having a severe reaction to the tablets and so they were changed. He went on to say I had Postnatal depression and that accounted for all the symptoms.

Anyway, over the years I've suffered the same pain and fatigue and it was always put down to various problems, until I moved to a different town and got an amazing doctor. He asked about my background and read my notes and only then did he diagnose me with Fibro. Over 20 years has gone by, with many appointments, surgery and prescriptions for many different drugs, have I now been put on a combination of tablets that are starting to help me. All this because I never once had come across or heard of fibromyalgia. So, I have been to the bottom of that deep dark hole on many occasions, been operated on many times and prodded to within an inch of my life but I've always managed to fight back because of my amazing family.

I wish I had known sooner but for some reason I had to go down that path and I still don't know why. I talk about fibro on social network sites, so if it can just even reach that 1 person and help them get diagnosed sooner, it would be worth the hell I've been through.

Thank you for being there and sorry for the long winded reply Deejay but I hope you don't go down that same path as I did.

Good luck and my thoughts are with you.

[Deejay02]

Rachel I wrote you a long reply on here last night (I went down the winding road with it) and I obviously did not press submit grrrrrrrr. you made an interesting point regarding the success rate of surgery. My orthopedic consultant has said that if I decide to go through with the nerve decompression operation my success rate is 50%, as the nerve block was 70-90% and did not work, it has reduced the success rate of the op. ummmmm i think I have a lot to talk about to the GP on Thursday.

Big hugs X