Is it? Or isn’t it?

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AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 6
   Posted 12/5/2017 1:24 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 : 2734
   Posted 12/6/2017 5:09 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 : 17753
   Posted 12/8/2017 8:56 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 : 6
   Posted 12/27/2017 8:37 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 : 2186
   Posted 12/27/2017 1:50 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 : 6
   Posted 1/31/2018 11:07 AM (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 2:51 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 : 17753
   Posted 1/31/2018 7:27 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 : 6
   Posted 2/8/2018 4:50 AM (GMT -6)   
Almost Medfree, I was having severe spasms nerve pains running through my SIJ due to having a preexisting 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, 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) sonrather than them being the cause of these pains and stumbles, they have actually helped with the pains. Soon 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

AlfaLady
New Member


Date Joined Dec 2017
Total Posts : 6
   Posted 2/8/2018 5:11 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 : 17753
   Posted 2/8/2018 1:40 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
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