Hello, any advice desperately needed (long post)

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Hello, any advice desperately needed (long post)

Postby Bobbs » Mon Nov 12, 2018 2:18 pm


I think I’m looking for an explanation as to how I’m feeling.

8 years ago I prolapsed a disc at L4/L5 which needed surgery. Following this I made a decent recovery and went back to work. On my first day back one of my colleagues had a cardiac arrest beside me. Being a nurse I immediately went into resuscitation mode and in the process as I lifted him onto the floor I reprolapsed L4/L5 and also L5/S1. This led to more surgery and unfortunately because of various complications I was left with severe nerve pain. Apart from this I was extremely healthy. I ended up being medically retired from work.

In the time since then things have deteriorated significantly health wise. I’m now on MST, Sevredol for breakthrough pain, Gabapentin, I can’t tolerate Pregabalin, antidepressants, antihypertensives yadda yadda.
Over the past 18 months things have deteriorated till it’s now unbearable. Symptoms include:
Hot and cold sweats on minimal exertion. Today I was sewing fir 20 minutes and had to stop as I was staining my fabric with sweat
Intractable pain in my lower back to the extent I’m in tears
Joint pain, my GP said I’ve arthritis.
Tendonitis out of the blue
IBS, I aphasia that for years but it’s so much worse over the past 7 months
Regular sinusitis, I keep getting antibiotics got this
Ghastly sleep pattern. I’ve gone from an 8 hour a day gal to maybe 2 hours
Sheer and utter exhaustion. I’m talking bone weary all I can do is go lie down
I developed severe depression 4 years ago and at one point didn’t see a way out. I’ve had counseling but I’m still very depressed but not suicidal
Brain fog, omg, some days I can’t find any of the correct words, hubby and I both thought it wS down to gabapentin.

I ve raised the subject of fibromyalgia with my GP who is lovely and normally on the ball. First time she dismissed it, the other week she said even if it was you are on the right treatment.

I’m not looking fir more medications, I just want some explanation as to why I feel so dreadfully unwell and feel a total burden to my lovely husband who has his own health problems. Over the past 8 weeks I feel worse than I ever have and my energy and strength is nil. I can’t even make meals which I always always did. Hubby can’t cook due to his own problems.

Can anyone relate to all this or am I clutching at straws. I really like my GP and don’t want to change but dear God, I need some explanation.

Sorry for the horrible long post
Lots of other niggling things
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Re: Hello, any advice desperately needed (long post)

Postby *Lisa* » Tue Nov 13, 2018 12:10 pm

Hi & :welcome: to the forum.

Without being assessed by a professional I can only speak with my own personal opinion.

To start with I totally understand the disc prolapse. I currently have been having treatment for a L5/S1 prolapse. Iv had this now for a few years! Doesn’t seem to heal. I was offered emergency surgery but when it came down to it one of the surgeons talked me out of it and suggested I try the injections. I’m waiting on my second lot.

I have suffered nerve damage from the prolapse. I can’t walk without a stick, my legs muscles go into extreme cramps and spasms, my leg has weakened resulting in many falls and the sciatica is very painful. I was told I had a massive disc prolapse which was pressing into the nerve canal. Took 2 consultant radiologists ( 3 hours!) to use there skills in getting into the tiny tight space to inject the medication.

Thing with me is the fibro was masking the initial prolapse symptoms so it wasn’t until my leg went numb did the doctors send me for a MRI then I got the results back in a day! Obviously needing emergency attention.

Fibromyalgia is chronic widespread pain and stiffness with many other symptoms and associated conditions. To be diagnosed you would have to have been in constant pain for 6 months or more and most doctors go on having tender/ trigger points around the body mainly located around the neck, shoulders and back. Fatigue / sever exhaustion is one of the main symptoms.

There is not one particular medication that is for fibromyalgia. A lot of people have a combination of meds and along side this some have treatments like physio.

Not one person is the same which is why treating symptoms differs for each one of us. It’s a trial and error process. It won’t get rid of all the pain maybe take the edge off it.

My advice for you is to ask your GP for a referral to a rheumatologist to talk about fibromyalgia and they can assess you and diagnose if they feel it is.

Apart from that you can ask to be referred to a physio and see what they think. This can be done privately also.

You do have some symptoms there but because you have a lot going on in your back like arthritis and disc problems it really is very hard to distinguish one from the other, I know as I have arthritis, disc problems and fibromyalgia. When this combination happens it’s really hard for doctors to work out one from the other. My physio is struggling treating me because of so much going on.

I know that when you have other back conditions like prolapse and arthritis it can put a lot of strain on the spine and muscles causing other pains and problems. I have just been told my hips maybe being effected now because of so much going on in my back so have to look into them being scanned for inflammation.

Good luck and hope you manage to get some answers.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Hello, any advice desperately needed (long post)

Postby johnnyXS » Wed Nov 21, 2018 4:59 pm

Very sorry to hear about your situation Bobbs you have my sincere sympathy.
Lisa has provided an excellent response .

My partner suffers badly with Fibro and has been for several years now. i find it so very hard to bear as I watch her contort with pain and suffer in silence .
She has recently been taken off all HRT Meds which has naturally led to continuous hot flushes and sweating as if She isn't suffering enough .
Add to that nightly sinus issues for which she has to take Puritan and like you She rarely gets more than 2-3 hours sleep a night.(If I don't get 7 hours I'm suicidal and extremely irritable lol.)

I have done extensive research but still haven't really found a satisfactory explanation of the cause/s of her conditions

We tried CBD oil which was about as effective as a chocolate teapot because we couldn't afford hundreds of £ pounds for high strength .We are hoping that eventually the law on prescription Cannabis will be further relaxed to allow more sufferers access effective pain relief

My advice would be to get a full blood panel to check for Hypothyroidism, T2 Diabetes and any deficiencies in minerals and Vitamins especially Vit D3, B12 and Magnesium.
I suffered with chronic aching in my ankles and wrists for months until I supplemented. For nearly 4 months I sat in the armchair all night long with barely 2 hours sleep and constant aching and restless legs .

Within 3x weeks of supplementing D3 , K2, & Magnesium the joint aching completely disappeared and I haven't suffered with it since ! I have since recommended it to two others in my Family and their chronic joint pain has also significantly reduced . I take 800mg Magnesium 3000IU VitD3 and 90ug VitK2 daily.

Recent scientific research has found correlations between high blood glucose levels and inflammation. You can get checked for Diabetes at most large Chemists for free . You don't have to be a Diabetic to have moderate insulinemia which can exhibit the following symptoms Weight gain.Fatigue, Feeling anxious or panicky, sweating, itching ,inflamation (particulary head and neck) Brain fog ,mood swings, frequent hunger and sugar cravings, etc . I have Type2 myself as well as hypothyroidism , prolactinemia , L5/S1 prolapse and various other conditions.
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