Is it? Or isn’t it?

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AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 7
   Posted 12/5/2017 2:24 PM (GMT -6)   
Brand spanking new member.

For some time I’ve been experiencing wide spread mild body pain which felt like bruising but with no visible marks. And what I can only describe as occasionally feeling spaced out, like I’m physically there but not really. vision being watery, and feeling kinda giddy and shakey.
I currently have osteoarthritis in my left hip and I’m awaiting a hip resurfacing operation. I regularly take tramadol, gabapentin and occasionally amitriptyline.

I was diagnosed with hypothyroidism back in August and I put the symptoms down to that. (I know the symptoms of both hypothyroidism and fibromyalgia have many similarities) My thyroid screen check show my levothyroxine is working well and I’m within the normal range, however I’m still very symptomatic. I visited the GP a few times with this widespread pain and was found I had a Vitamin D deficiency.
I’m on a loading dose, and should be feeling some relief, but still I remain symptomatic.
Most recently I went on my staff Christmas party, and came home in agony. In the space of a few days my entire body feels like it’s in agonising pain. From my fingers aching and burning up my arms, feeling weighted and heavy as well as aching. Pain across my shoulders, down my neck and back. My hips and buttocks. Down my thighs, my shins, calves and feet. I’m struggling to walk or simply move around, even resting I’m in terrible pain. I get little relief from my current analgesics.

I know there are links between hypothyroidism and fibromyalgia and vitamin D deficiency all occurring together..
I’ve now been referred to a rheumatologist and hopefully will get answers soon.
I’m signed off work, but I’m terribly worried I may have to give up working, or change my job to something less physically demanding.

R

Post Edited (AlfaLady) : 12/5/2017 12:41:30 PM (GMT-7)


Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2750
   Posted 12/6/2017 6:09 PM (GMT -6)   
Welcome, AlfaLady!

Your symptoms sound very familiar. You're making a smart move--seeing a rheumatologist. I hope you can get a definite diagnosis.

Microwavable "bed buddies" help my pain a lot, as do a heating pad and topical muscle rub creams. Soaking in warm water helps, too. This time of year is cold in my area, so I dress in layers, and that seems to ward off pain and achiness somewhat, too.

Any chance you could do your work from home or work part-time? I know some here do that.

I try to keep moving as much as possible and also pace myself when working. Alternating sitting and standing is sometimes helpful.

Hope you keep posting and letting us know how your appointment with the rheumatologist turns out.

Have you read the very first post on this forum--fibro 101? It has some really helpful ideas. I also like some of the videos on this forum.

Wishing you the very best! smile
"Pray, hope, and don't worry."

St. Padre Pio

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 12/8/2017 9:56 AM (GMT -6)   
Hi, Alfalady, and welcome! Those sound like typical symptoms of Fibro but I'm so glad you will be seeing a rheumatologist. They should run tests to rule out other illnesses like Lyme and lupus, since they share many of the same symptoms as fibro.

I was struggling to walk, was getting raw nerve pain down the inside of my legs to the midddle of my calves. I saw a rheumy and was diagnosed with ankylosing spondylitis and sacroiliitis along with fibro. I was put back on ibuprofen and also given a muscle relaxer called Robaxin (methocarbamol) that has made a significant difference in my pain. So there are answers out there for you. Keep looking until you get the help you need.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro abd you will learn a lot there.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Right now members are bogged down with Christmas preparations...including me...but we do respond to questions. Please let us know how your rheumy appointment goes because we do care about you. Hope to hear more from you soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 7
   Posted 12/27/2017 9:37 AM (GMT -6)   
Thanks luvsminis and Sherrine for your replies.

I had a bunch of bloods done prior to my referral to check my infection markers, for coeliac disease and other hormone levels.
Tomorrow I am being seen in the rheumatology clinic for the first time.
I’m hoping for some answers, but in the reality of things I’m expecting this being a long process.
I’m soooo low at the moment as I’ve just qualified in my job, and fear having to give up. It’s very physically demanding, and in my current state I couldn’t work.
Im not low just due to the love of my job & it being threatened, but the financial strain this would place on our family if I did have to give up.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2229
   Posted 12/27/2017 2:50 PM (GMT -6)   
Hi alpha,

I often felt like i was coping with fibromyalgia, until ..my vit d sank too low..and the combination of those two was really bad..it took me a while to get my levels back up and feeling better, but i did..

You may have the combo effect of more than one thing happening also..but just believe you can get some help and feel better !

Lj

AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 7
   Posted 1/31/2018 12:07 PM (GMT -6)   
So a letter arrived from the rheumatology team today.
So maybe a bit of news re what the hell is going on with my pains etc.

Full Blood Count shows raised infection markers of white and red cells. So something is happening... 😏🤔

Normal Liver, kidney, calcium, ck & immunoglobulins. So that’s good. 👍🏻

Rheumatoid factor is negative antic CCP is normal
ANA is negative, again more good results. 👍🏻👍🏻

But my HLA B27 genetic marker is positive. ☹️
This particular result took a month. 👎🏻👎🏻👎🏻
I am to return to rheumatology for review by the consultant. More bloods a week before... 👎🏻
This result could indicate reactive arthritis, and or ankylosing spondylitis.
But accompanied by the spaces out moments quite possibly a bit of fibromyalgia thrown in for extra measure.

Of
Course I’m only second guessing at the moment...

R
X

almost medfree
Veteran Member


Date Joined Jan 2004
Total Posts : 2570
   Posted 1/31/2018 3:51 PM (GMT -6)   
Alfa, could any of those medications you are currently taking be affecting you?

When I was put on Gabapentin it caused a lot of pain in one of my thighs. You might want to google reputable websites and look up the side effects of each of those medications.

To Add: When my mother-in-law was put on Gabapentin, she collapsed in the dining room of the facility where she lived at the time. Her legs gave way. When a friend of mine was put on that same medication, she also came down with leg pain.

These medications affect us all so differently. Physicians are helpful but we certainly need to also check things out for ourselves.

Good luck to you.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 1/31/2018 8:27 PM (GMT -6)   
Alfa, I have ankylosing spondylitis and fibro also. I wrote about it in my post above. I also take Vitamin D3. I am doing quite well now! So don't give up on that job just yet. If you do have ankylosing spondylitis, generally the first line of action is ibuprofen and then Robaxin, a muscle relaxer, has been shown to help. It sure has helped me a lot!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 7
   Posted 2/8/2018 5:50 AM (GMT -6)   
Almost Medfree, I was having severe spasms nerve pains running through my SIJ due to having a pre-existing hip problem. I’ve had surgery to it and require more, I’m currently being assessed for a hip replacement.
The tramadol helps with my bone pain due to hip, and the Amitriptyline and gbapentine help with the nerve pains and shooting leg and groin pains. And I was happily plodding in with these, and have been for a couple years when my medication was changed.
I didn’t have any other problems until I began being symptomatic of my Hashimoto’s thyroidism, which was just before my diagnosis. I just thought I was sore from my very physically demanding job, then I was diagnosed with Hashimoto’s hypothyroidism, so I put these relatively new symptoms down to that, but things began getting worse despite my thyroid screen showing my levels were below the level that aim for. I was slowly getting worse though. Foggy moments, rapid heart rate, feeling high and strange. Like an echo was occurring around me. Being there physically but feeling like I’m
Not actually there. (Odd) I began stumbling and hurting more and more. My feet, elbows, knees, hips, lower back all hurt.
I suddenly crashed at the very beginning of December, I couldn’t move without crying in pain, I needed help getting dressed/undressed, washing and bathing.
My doses of Amitriptyline and gabpentin have been increased and I can now carry out my own individual personal care needs, (just a bit slower) so rather than them being the cause of these pains and stumbles, they have actually helped with the pains. So I can feel confident in saying it’s not the medication.

I do feel slightly reassured that we may be closer to finding a cause based on my last lots of blood tests.
Increased white and red cells and a positive genetic marker on my HLA B27.

R

X

Post Edited (AlfaLady) : 7/29/2018 1:05:16 PM (GMT-6)


AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 7
   Posted 2/8/2018 6:11 AM (GMT -6)   
Sherrine,
Yeah I recalled your post as soon as the blood results were sent to me and after a bit of google-ing.
My worse area of pain is my back. Particularly the lumbar area. I get pain and stiffness in my shoulder and neck too. My neck makes a horrible grating sound when I look from side to side, up to down and back up. And it’s horrible if I roll it all around my shoulders in a circular movement. If my Hubbie gives me a back rub it hurts so much. But it’s also therapeutic too. I can’t explain it.
The boney parts feel tender and bruised and the surrounding tissue swollen.
I get up from the couch and I’m walking like a stiff old grandma.

Unfortunately for me I’m allergic to NSAIDs which makes treating pains and inflammation very hard.
I’ve had to spend a day in hospital once every 3-4 months for steroid injections into the cavity area inside my hip joint, between the ball and top of the socket. This is done via fluoroscopic X-ray guidance. And extremely painful. And having these has ensured I’ve been able to continue working.
But since the pain in my back became agonising I haven’t been to work. I’ve not worked since the very beginning of December.

I’m trying to bring my appointment with my rheumatologist forward. As I’m not seeing her until May.

R

X

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 2/8/2018 2:40 PM (GMT -6)   
Even though i was taking the maximum safe amount of ibuprofen,I still had enormous pain. Once given the Robaxin, the pain got less and less. Muscles can tighten and probably squeeze nerves. I now only take ibuprofen twice a day...half of what I was taking. So you might ask if you could try Robaxin...I use the generic methocarbamol...and see if it gives you some relief! It’s worth a shot!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 7
   Posted 7/29/2018 2:35 PM (GMT -6)   
Since I last posted here my rheumatologist just turned round and said that I didn’t have any sort of inflammatory arthritic condition and was going to discharge me.
She said all of this without examining me, or performing any image studies.

I refused to accept that there wasn’t any sort of inflammatory problems. Deep in my gut I believed I had Ankylosing spondylitis and suggested this. The rheumatologist said I didn’t have it. But I asked how she could say this without performing any images.
I’d had an X-ray of my hip some months before and she said that it showed no evidence. And therefore I didn’t have it. I asked about non radiographical A/S. she said I didn’t have it.

I had a tantrum and refused to leave until image studies were ordered.
These were eventually ordered, but she said once they had been reported on, she would write to me with the results and would then discharge me.

The images were done, and the findings are
I have a bulging disc in my C-Spine, with some spinal inflammation and stenosis being evident.
I have a bulging disc in my lumbar spine, with some inflammation being present and some thickening at the edges of the 3,4 and 5 vertebrae. There is also inflammation within The sacrum and Sacroiliitis has been diagnosed from the MRI.
So I’m not going to be discharged from the rheumatologist after all.
I have however asked my GP to refer my rheumatology care to another hospital and rheumatologist, as I don’t want to be treated by a consultant that has so little empathy or interest in her patients symptoms and needs.
Had I accepted her discharge of care that I had no form of inflammatory arthritis or spondyloarthritic condition, I would be left suffering and getting progressively worse with the wrong type of treatment.

I have since has seen the spinal team, and pain management team, I have had some injections in my spinal nerves, and in my sacrum of cortiscoid steroids.

The stiffness is reduced and some of the pain also. But I’m so much better than I was before.
And now I know what I’m dealing with.
It is likely that I will also be diagnosed with fibro also due to some of the pains and sensitivities I have within my upper limbs, but this could also be due to the spinal stenosis in my C spine.

I’m feeling incredibly low much of the time, as being in pain is so exhausting, and no-one really understands, especially as my days of pain and fatigue vary greatly.
There are days I need to lay down for an hour just after a shower, and that I fear I’m going to collapse in the shower.
Then there are the rare few days where I actually manage to go out shopping and don’t feel like I need to sleep for a few hours afterwards.

But that been said, I’m feeling a little more positive now than I was 6 months ago.

R

xx

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17895
   Posted 7/29/2018 5:14 PM (GMT -6)   
I’m so glad you were persistent and found out what you are dealing with. That’s half the battle. Hopefully your new rheumy will be able to help you feel a lot better. I know mine did.

Thank you for getting back with us and letting us know all you have gone through. A good rheumy should be able to help you keep moving and enjoying your life.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2229
   Posted 7/29/2018 6:10 PM (GMT -6)   
Hi,

Its much better to know what you are dealing with. So they can help appropriately..

I sure would want a different DR . Also..its so easy for them to assume things, but not good for the patient.

Fibro affects the nerves, so any pains are felt in a worse way..

Always try out self help methods with whatever your Dr does to help you also.

Hope they get you feeling better!
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