Need help

[Notifewithfibro]

I am going to list all of my symptoms. I would like anyone to tell me if they have a similar symptoms. I took the fibromyalgia blood test and scored a 92. I however feel that I may also have MS bur since I have been labeled with Fibromyalgia the doctors won't look into anything else. I am getting to the end of having any hope left. I am sick and tired of going to the doctor and getting no help. So here is my list:

Thorasic pain in my T4-T5.

Fail strength tests due to after the first one have shooting pain that leads to an out of body screaming.

Itch on the bottom of my feet that is painful and itching it gives no relief and no anti-itch cream helps.

Forget words- have a bachelor of science degree

When I sit down getting a electrical pulse up my spine

Loss of balance- fall weekly

Blurred vision- eyes start out fine but after 10 minutes reading goes blurry or have double vision.

Have pain in cocyx area that then shoots up to lumbar area then shoots painbdown legs

Can't crouch down- knees bent and butt lower to floor- Can't get back up.

Sometimes my feet are really hot but I am cold or feet are cold but I am hot.

Morbid restless leg syndrome- my brain or nerves are miss firing and I have to kick my leg high in the air or I am in extreme pain not only legs but my brain hurts too.

Severe central sleep apnea

Vertigo

In dark I have no equilibrium.

Get bladder spasms

Have fatigue.

Only place I am pain free is in bed.

On 25 MG of Fentanyl patch that I change every 72 hours plus take 2 oral opioid pain killers but still in pain.

If I keep my head or arm or legs in same position for more than 15 minutes those joints feel glued and hurtful to reposition.

Headache that lead to migraine.

Allergic to cortisone.

Can't lay on my back and have any pressure on the spot where spinal cord meets with skull

Herpes simplex 1- cold sores

Have a heart murmur.

Can't walk further than 11/2 blocks ( feel like body is just going to collapse). And no I am not heavily overweight.

Can not be hug tightly.

Cornacousis- where my cornea is not round but instead it is step like a mountain top.

Can't lift more than two pounds.

Loss all my muscle mass- used to work in nursing home and could lift heavy patient by myself.

That is all I can remember at this time.

Arthritis in back, neck, mostly my back at a young age 25. Now 44. That is how long I have dealt with this.

I am at my wits end. If it wasn't for my husband and 3 kids I would rather be in heaven.

Please if anyone can help me or can relate please reply to my post.

[desquinn Partner Volunteer FMAUK Trustee]

a lot of what you list could be attributed to fibro and would fit. The FM/A (?) blood test if that is the one you mean is not really a good test but your presentation and age etc would fit. But its only a PCP / GP or rheumatologist that is going to move things forward.

[golly123]

Good morning

I am so so sorry to hear this.

In my humble opinion, (I have been diagnosed with fibromyalgia and all sorts of osteo) issues too.

I would INSIST on getting a second opinion on this. Your symptoms are far far worse than mine. I did read up on MS. WHEN IN DOUBT CHECK IT OUT. That's what doctors are paid for.

See your doctor again. Or go and see another doctor urgently. You need to get this sorted as soon as possible and you are entitled to this.

I am so glad you have good family support.

I wish you all the best and, if you have the time, please let me know how it goes.

There is no need to suffer like this. Ring them today.

Best wishes Jo x

[Kishi]

I would say a majority of your symptoms do relate to FM. However with the back and legs you could always speak with your GP about a scan just to rule out a disc/nerve issue as a few of your items could be a slipped disc. I had similar with the foot/leg until my chiro worked it out and now get monthly adjustments to my low back which alleviated the foot pain and leg issues greatly.

[Gaballetto]

When I was first diagnosed with FM 15 or so years ago, I happened to mention a very sore back to the rheumatologist on a day when he asked 'how are you?'. A subsequent MRI revealed extensive degenerative changes in my spine (I was only in my early 40s). The rheumatologist then changed his diagnosis to 'FM secondary to spinal abnormalities'. Have you had your spine thoroughly checked out? eg for neck problems, or lower lumbar and sacral abnormalities?

By the way, I have also found that doctors will not look any further than FM when I go to have other problems looked at. I swear, I will die of some kind of cancer before a doctor will consider that my symptoms (headaches for eg) may not have been 'all part of the FM'

[golly123 in reply to Gaballetto]

Hiya. I was diagnosed with FM last week. I broke my hip last July. Waited ages to see a rheumatologist and they took ages to diagnose this. Also got told I have osteoporosis in my left femur which is my good leg. Osteopenia in my spine which is really worrying me and osteo-arthritis too.

When I saw the rheumatologist in early Feb she told me my spine was crooked or curved. X-rays were done everywhere and I found out I had fractured two of my vertebrae in L4 lower back. As I was in hospital with my fractured hip and tested positive for covid and went into a coma for nearly six weeks and nearly died too. I don't know if these two fractures happened when I fell and fractured my hip. I would like to find out when this happened. I also had an MRI scan too.

Are your degenerative changes in your spine due to Osteopenia. I hope you don't mind me asking.

I am freaking out over my spine. I'm only 59 and there is no history of any of this in my family. Are you worrying like me?

Sorry about this reply. I hope you are OK. I'm going to try to find out when this happened.

My best wishes Jo

[Gaballetto in reply to golly123]

Nobody has ever come up with a reason my spine is degenerative. The good thing is when a rheumatologist checked xrays some years after treating me for a trapped nerve, there didn't seem to be any worsening over 4 years .I made huge lifestyle changes after an orthopaedic surgeon said that if I didn't stop riding horses I could be in a wheelchair by the age of 50 - pretty tough to take when that was my occupation at the time - caring for and training horses. Now I am 62 and walking the dog 5-6 miles a day so it was worth it!

I am currently looking into getting HRT as I don't want to add osteoporosis to my existing bone problems. Unfortunately GPs are not well versed in menopause and HRT so I am paying for private consultations with a menopause specialist. It's my quality of life, so I don't care if I spend all my savings on this, I just want to be able to stay active

I believe all women should have at least a discussion with a doctor about their options round menopause - a lot may get great benefits!

Best wishes back to you Jo

Gabby

Oh, and I'm impressed you came back from the Covid coma! Well done. Not sure anyone will ever be able to tell you WHEN your spinal traumas occurred - I had evidence of past fractures too, as well as 5 discs completely missing, but because I have had back pain for as long as I can remember, I guess I didn't seek treatment for each incident, and once they're old injuries I guess it's hard to tell when they happened

[golly123 in reply to Gaballetto]

Thanks Gabby. I went through the menopause aged 47. I'm not sure if that was early or because I only have 1 fallopian tube due to an ectopic pregnancy. I never asked about HRT as I luckily didn't really suffer too badly from hot flushes. I wonder if that's behind all this.

I also think that all women should be checked for calcium and vitamin d maybe every 3 years too after a certain age. This would surely prevent osteopenia, osteoporosis etc. I'm not a gp.

I was diagnosed with osteopenia in my left foot in May 2019. No-one tested me for calcium and vitamin d. I guess possibly this is why things progressed. I am trying to possibly sue as they should have done something about this at that time possibly.

What's done is done now. Be good if other women got these tests early to avoid all of this horrendous mess. And also get put on hrt too.

I'm so sorry you couldn't work with horses too. I do hope you are OK.

I send you my best wishes. Thanks again Jo

[Mac333]

I feel your pain. And have the symptoms you have. Especially hurtful is the repositioning every ten to fifteen minutes. I take zormorph and other painkillers but to be honest when I get a flare up nothing helps. I wish you well. X

[Mac333]

Forgot to say I have fibromyalgia but had a slipped disc and osteo in my shoulders and knees and joints. So get checked out. XXX

[AnneD62]

I finally got through to my GP about constant pain all over and increasingly troublesome fatigue. On my asking, he gave in and prescribed me 12mcg Fentanyl patches. I must say there is a huge difference in me and on the odd day I might be required to take a couple of 30/500 Co Codamol (Solpadol)

[Flyfishing123]

Hi, I could relate to 90% of your ailments. I have had to cope with chronic degenerative arthritis in my spine from 4th August 1987. It was not until July 2001 that whilst having my eyes tested that the opticians told me to see my Doctor. I was having blurred vision, memory loss, migraines, vertigo and muscular spasms. After many scans I had an operation to fuse T4 and T5 and build in a titanium cage. This prevented my nerves being trapped between the two vertebrae. The op was a successful but I had still the horrendous lower back pain. I have been everywhere to get this sorted but was told this would not be possible. I have been on opioid pain killers but the last ten years I have been on fentynol. My dose went up from 25mg patch to 100mg patch. I was diagnosed fibromyalgia a number of years back and have all your pains, the restless legs clan be exhausting. I was 25 yrs of age when I was injured on duty, I was 41 when I started opioid pain killers and have not been off them any day since. I have never been pain free using these so called pain killers so I came down from 100mg to 25mg and have not noticed any difference. Living with constant pain is hell, living with people who suffer constant pain can be challenging. I too have wished many a day I would never wake up that's when I do manage sleep. I am also married with children and its only them that keep me going day to day. One thing has helped me lately but this is not a legal within UK. Keep getting up each morning and trey your best to stay positive. If you need to chat send me a message anytime you like.Take care

Atholl