Author Topic: debilitating muscle spasms and pain  (Read 1047 times)

Judie P

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debilitating muscle spasms and pain
« on: May 11, 2021, 09:58:32 AM »
Anyone here get to the point where muscle spasms and pain gets so bad that nothing works?  I have been on Naproxen for a couple of years along with Gabapentin 300mg.  Naproxen is now making the spasms worse.  I am trying 20mg of Baclofen 3 times a day according to the NP instructions, but the only thing making a dent is Norco 5-325.  I had some left over from major dental surgery.  I am not getting a response from my doctor.  I have primary Sjogrens and stenosis in my cervical and lumbar spine.  Am i alone out here or is this what I have to look forward to in my first year of being 70?  I don't want to go to emergency and sit there for 5 to 18 hours waiting for someone to help me.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

Judie P

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Re: debilitating muscle spasms and pain
« Reply #1 on: May 11, 2021, 10:03:07 AM »
I am scared and I just want to know I am not alone in this?
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

jazzlover

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Re: debilitating muscle spasms and pain
« Reply #2 on: May 11, 2021, 11:47:42 AM »
hi, Judi

Yes, I have constant pain. I take metaxalone (muscle relaxant) and curcumin three times a day.

I really can't take pain meds, so it's not an option unless I have surgery and then all H will break loose.

You could try going to a pain management doctor for help, but I do know they treat you like an addict. I would hate that.

But truly, find something you can take every day to knock down some of the inflammation.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Judie P

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Re: debilitating muscle spasms and pain
« Reply #3 on: May 11, 2021, 12:10:25 PM »
THANK YOU!  I don't feel so alone.  Just typing spasms my shoulder and arm.  I see my doc on Monday.  We are going to talk strategies for long term relief.  Love you!
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

meirish

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Re: debilitating muscle spasms and pain
« Reply #4 on: May 11, 2021, 10:29:52 PM »
When a person has these spasms the treatment is usually muscles relaxants and there are several kinds. It is time to see your doctor and talk over a new attack on these spasms and pain. Taking pain killers is not a good thing to do especially when the doctor is not the one prescribing them for the specific problem. So often people who are desperate will take the pain killers on hand because they are bloody miserable. I am so glad that you reached out for suggestions. It helps to know that there is help out there.

When a person doesn't find there doctor coming up with a method of medications that helps with spasms and pain it is time to find a second opinion. I am assuming that your spasms are from an autoimmune disease. Also, seeing a neurologist is also a good option as they are good at identifying where and why there are spasms and knowing the meds that will help. If you are in a flare affecting the nerves which are stimulating these spasms and pain it might be that some steroid might be in order for short term while getting your body on other new medication.

Good luck and keep us abreast of how you are doing. Anything you learn can be of help to others on this forum. meirish

Linda196

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Re: debilitating muscle spasms and pain
« Reply #5 on: May 12, 2021, 03:20:37 AM »
I've found that maintaining a high normal magnesium level helps with the spasms a bit. So far nothing has completely relieved them.
The problem with magnesium is that it can have a laxative effect as well, so finding a balance can be a bit of a juggling act.
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Carebear

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Re: debilitating muscle spasms and pain
« Reply #6 on: May 12, 2021, 08:46:27 AM »
Hi Julie P,

No, you are definitely not alone.   I have suffered, and I do mean suffering, with muscle pain for the past 15 years.  I have tried almost everything. 

Now after all this trial and error, I have very recently begun getting benefit from a most unlikely source.

I see a combination of massage therapist who works gently with me, a chiropractor who uses a combination of treatments that include Eastern medicine techniques,  and a physiotherapist who combines both traditional physiotherapy techniques with acupuncture. It only took me 15 years, but I now have a team who treat the whole body.

That's been my experience.  I do also take 2100 mg of gabapentin daily (in three separate doses daily), and I am about to attend a Cognitive Behavioural Therapy group to improve my sleep. I see my treatments as layers that build on one another.

I hope this information helps in some way.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

Carolina

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Re: debilitating muscle spasms and pain
« Reply #7 on: May 12, 2021, 10:06:38 AM »
Hi Judie,

You're not alone at all.  Immune Disorders affect every part of our bodies.  Pain is the most common denominator, along with profound fatigue, and depression.  The inflammation from Immune Diseases that causes pain, also causes fatigue and depression.

1.  I see a pain specialist at Duke's Innovative Pain Center.  The doctors there are marvelous and don't treat me as any sort of 'crazy person'.

I often have 'pressure point' tests as part of the diagnostic process.  I think they are particularly important in diagnosing fibromyalgia, which I don't have (wait, there's something I DON'T have?).

I am prescribed Low Dose Naltrexone, and I wish I could say my pain is magically gone.  Alas, not the case.  But it helps, of course.

2.  My pain syndrome is complicated by the fact that I cannot take any opioid medications (even Tramadol), or NSAIDs (Like Aleve, or Ibuprofen).

Because I have Small Fiber Neuropathy (nerves in my skin are damaged, so they are all switched on for stinging burning stabbing pain....soo much fun), I HAVE to take Gabapentin (3600 mg/day, yes 3,600 mg/day) so that I don't feel like my skin is on fire.  My lips, tongue, eyelids (!) burn, and my finger tips feel like needles are being stuck into them. 

Yep, I take all that Gabapentin and it still doesn't stop it all.  I went up to 4,200 mg/day, but tried cutting back and had to settle at 3,600 mg.  And yes, I'm 'groggier' than usual.....Gabapentin has that effect.

3.  Later this month, the pain specialist doctor will perform an ablation on three nerves in each knee, to help with the pain in my 'bone-on-bone' knees.  I can't have knee replacement surgery because I'm a terrible fall risk due to profound nerve damage from my Immune System, in my legs.  I wear braces and walk with the walker.

I cannot stand for more than a minute without my back going into spasm. I must sit down immediately.  Clearly I can't cook, clean my house, put stuff away, do the laundry.  My life is very limited but it's ok.

4. Muscle relaxants are wonderful for muscle spasms (which are horrible).  I had muscle spasms after surgery in 1999 and was given an RX for Flexeril.  I STILL have about 10 tablets left (I'm not an 'addict', clearly).  And even after 22 years they are effective.

I have never asked for a new RX, but I may discuss this with my pain specialist, so I can have another RX.

5. NEVER apologize for your pain.  Never allow any doctor to dismiss you, shame you or otherwise blow you off.  Walk out if necessary, and write a strongly worded email/letter to anyone in management (if they exist).  And go to the websites where doctors are rated by patients and take your revenge!   So satisfying.
 
6. I live in a Senior Living Community and can go anywhere with my walker: to the gym, the pool, to play bridge, to eat in the Dining Room, attend social events.  This is wonderful for me, especially since I had to give up driving in 2016 due to my disabilities.

7. The perfect pain reliever for me is Prednisone, of course, in doses of 4-5 mg or higher.  Of course Prednisone is terribly damaging to every part of your body, so it is never prescribed in anything but a rapid taper, 7-10 days.

I have a condition called Polymyalgia Rheumatica which has only one symptom, outrageous, steadily increasing pain.  The pain occurs in the neck, shoulders, upper arm/hips, pelvis. 

The ONLY treatment is large doses of steroids (I started with 20 mg/day for two weeks) and slowly taper.  I am on year two of the taper and have finally gotten my daily dose down to 3 mg/day.  I hope to be off by August.  My skin is terribly damaged, all my tissues are in fact.

I had hand surgery in November (yes, I'm a 'hot mess') and the surgeon told me that  all of my tissues are fragile.

I wouldn't have started this treatment except that the pain is unrelenting and horrible.

Hang in there.

Elaine

PS, Irony of all ironies my Immune System is also 'deficient' and I have 35 grams of IgG administered IV by a nurse, every 4 weeks.  I have had this IVIG every 4 weeks since 2013.   My Immune System is unbelievable.  My particular Immune Deficiency Disorder is CVID.

PPS, My most recent diagnosis (January) is Macular Degeneration, which is associated with Immune Disorders.  It isn't painful, thank goodness, but MD will make me blind eventually.  I had an injection in my right cornea (eek!) every 4 weeks, and now will have the injection every 6 weeks.  The injections are not a cure, but they may slow down the progression of MD.  I have Wet Macular Degeneration in my right eye, which can be treated.  I have Dry Macular Degeneration in my left eye, which cannot be treated.

PPPS, I can give you links to all the research articles related to all the conditions described above.   8)
« Last Edit: May 12, 2021, 08:28:31 PM by Carolina »
Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.

araminta

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Re: debilitating muscle spasms and pain
« Reply #8 on: May 12, 2021, 11:00:14 AM »
Just a footnote to Linda196's post above.   I take magnesium every day, as magnesium glycinate, and it does not appear to have the laxative effect that other forms have (which is why I chose it, though I take it for sleep problems rather than for pain).

I notice that I don't get the leg cramps at night that I used to do before taking it, I suppose I was probably low in magnesium.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Judie P

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Re: debilitating muscle spasms and pain
« Reply #9 on: May 12, 2021, 02:10:01 PM »
Thank you all.  I sent a second message to my regular doctor and he responded stating that Norco is not a long term solution.  He did prescribe 10 pills though.  However, yesterday my husband stayed home with me as my essential tremors are now worse and my balance is more off.  I took the correct doses of Norco and Baclofen (as prescribed by the NP on Monday), and got extremely nauseous, weak and could not keep my eyes open (which allowed my cat to eat the chicken out of my salad bowl) and felt like I was going to faint.  I added the inability to lift my right arm up all the way due to what feels like a muscle in the upper portion of my inner arm.

We just got our massage business open again after 13 months of being shut down due to Covid, so I didn't want to have my husband cancel his clients.  I still can't see my doctor until Monday afternoon, but I was able to get an appointment with an urgency doctor tonight at 7:15pm.  I have seen her before for MRSA and C-Diff.  We only need to cancel one massage client tonight and I don't have to sit down at emergency all day waiting to be seen.  The last time I went to emergency, I sat for 18 hours (yes, 18 HOURS) before being seen.

My husband says I am always thinking about everyone else before me.  He may be right.

For those of you who asked, I take Venlaflaxine 37.5mg per day for fibromyalgia pain (on it now for 6 years); saccharomyces boulardii 5 billion as a probiotic (after having C. diff two years ago), and Naproxen 500mg and Gabapentin 300mg (one each) at night.  I have been getting away with minimal meds for the 6 years I have been diagnosed with Primary Sjogren's.  Looks like that might not be the case anymore.  3 weeks ago, I had blood work, lung x-rays, and an EKC done.  My heart, kidneys, lungs and other vital organs seem to be doing okay.

Will let you guys know how it goes.  Hugs, Judie
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

Carebear

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Re: debilitating muscle spasms and pain
« Reply #10 on: May 12, 2021, 02:45:00 PM »
Darn, Judie.  Auto correct changed your name, and I didn't notice.   Sorry about that.

I haven't been on this site much in the last year or more.  I miss this community. 

I wish you well with your appointment.

Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

meirish

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Re: debilitating muscle spasms and pain
« Reply #11 on: May 13, 2021, 10:37:07 AM »
I cant speak directly about the debilitating spasms that people have. I have only spasms occasionally...enough to realize that it has to be absolutely horrible to live with.

However, after reading all these posts that are here so far it is so-so clear that autoimmune disease is a something that is so under reported in all media. These posts should be mandatory reading for all medical students and residents as part of their training. We have all gone to the doctor for years with all these various symptoms and been referred over and over again to more doctors because to one seems to get it.

Doctors blame it on our "nerves"--- hypochondriac personality problems---attention seeking behavior--depression---you name it. The doctors scan us, x-ray us, multitudinous blood work is done---antidepressants--and many other medications added year after year to treat our misery and keep us from darkening their doors as ofter. Years ago I told one doctor and many others that it has to be autoimmune as you have ruled out everything else. Not to mention the miles traveled and money spent on drs. appts, medications and meal expense. A side note---years ago at a very famous clinic my husband told the head of the department: " your profession is the only one that gets paid for doing nothing". That was not well accepted and is not totally true but yet it is not totally untrue and holds a lot of implications.

One would think that anyone with many medical issues would be checked by the best immunologists early on and would maybe help diagnose some of us with out all the drama and insult we have to go through. The enormity of all of your and mine health issues and what it does to us and our families is unbelievable. An early diagnosis and intervention with the appropriate drugs for immune diseases might have saved us and our families a lot of physical and emotional misery. Just being believed and acknowledged as having legitimate complaints would be helpful to us in our journey. This doesn't apply to the great doctors we occasionally would see that could see that we really had something real going on.

The combined misery of just these few posts is heart wrenching. Blessings and hugs to all of you. meirish

Judie P

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Re: debilitating muscle spasms and pain
« Reply #12 on: May 14, 2021, 01:12:42 PM »
I went to see the "urgent" appointment MD Wednesday night.  My doctor had already prescribed 10 pills of Norco.  Thought maybe I could get some x-rays or MRI started, or an opinion that would help me figure things out more.  OF course, I got the "I just want to get home" doctor attitude. After explaining that the pain was going down the right side of my neck, shoulder, and arm with lots of muscle spasms, she decided I had a torn rotator cuff when my range of motion was slightly limited and needed physical therapy.  She decided to do an x-ray, which I assumed was for the neck and shoulder area.  Nope.  She decided to check for dislocation or fracture, to make sure her "diagnosis" was correct.  Well, x-rays don't show tears.  Before I left, she could not understand why I came to see her as my regular doctor prescribed 10 pills of Norco.
I did find out that she was not the doctor I saw for C-diff, but was the one who initially gave me clyndomycin for skin MRSA which gave me C-diff.  (Of course she denied it when my husband saw her for MRSA two years ago).

Here are the x-ray results:
No acute osseous abnormality

Narrative
RIGHT SHOULDER SERIES 3 VIEWS

History: right shoulder pain

Comparison: None

Findings:
No evidence of fracture or dislocation. No evidence of periosteal reaction.
Joint spaces are preserved. No evidence of soft tissue swelling or
abnormality.

Limited evaluation of the right chest is clear.

In April of 2019, my neck x-rays showed Severe degenerative changes of the cervical spine with severe central
canal and neural foraminal changes as described above. No significant
change from prior exam in 1917.

2. 11 mm cyst at the inferior left parotid gland.

Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

Judie P

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Re: debilitating muscle spasms and pain
« Reply #13 on: May 14, 2021, 01:44:37 PM »
By the way... my husband and I think it might be a ton of stress leading up to opening the business again after 13 months and a big zoom presentation I am giving tomorrow (while in a lot of pain).  I forgot what it was like to deal with doctor's who don't get us.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

meirish

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Re: debilitating muscle spasms and pain
« Reply #14 on: May 14, 2021, 06:23:26 PM »
As a person who has had CT scans and x-rays that show some of the same wordage I think that I would advise you to see someone who will scan your cervical area and maybe even thoracic to check for pressure on the spinal cord. This may not be related to a tear. I am not a doctor but I had some scattered type pain in both hands and up arms that were attributed to my carpal tunnel for several years. I eventually had burning in my hands and when I saw my neurologist I told her about the burning in my hands. I had no neck pain or symptoms that I would connect with disc problems in my neck.

Lo and behold the CT came back with very significant findings and I was told that I needed a spinal fusion or I would be paralyzed to could die. So she gave me a referral to someone she had told me about. A very good neurosurgeon in the cities. Within 2 weeks I had the surgery. I saw the CT when in the neurosurgeons office and it scarred me to death. Could almost have obstructed the spinal cord with my disc and I had no neck pain at all. He told me later I was in serious condition when I went to surgery and I am lucky to have done as well I am have.

Pain is such a weird thing and we often we can think we are having pain related to one thing and it turns out we are off the mark. I am having issues again with discs in the vertebra above and below the fusion. Time will tell. I had to have a carpal tunnel repair 3 months after my fusion and am having another one on the other hand. This will make 3 carpal tunnel surgeries on the right wrist and 1 on the left. However, I need to have the left done again. The one the orthopedic surgeon did after the fusion.

He said that most people only have one on each wrist but my inflammatory AID has just messed with my tendons in my wrists and elbows and keep making problems. Pain is hard to decipher but I continue to have positive CTs and EMGs in both these areas. It is getting old. Thank goodness I have avoided pain meds and do the compression gloves on hands which help and also will wear vinyl gloves on hands with put some pressure on my hands with some relief. No cure as still pain but at least more tolerable. Heard and ice packs help also. Hope you get this sorted out. These darn discs can really cause us more problems then I ever imagined. Good luck to you. meirish

Be aware that most tissue contains collagen. Sjogrens and other autoimmune diseases are called collagen diseases. This means that the collagen in our tissues is affected. The collagen gives the tissue its elasticity or makes the tissue "supple". With the Sjogrens and lupus, as  understand it, the tissues with collagen are affected. They can become inflamed and swollen and can lose their normal elasticity. The tendons and other tissues can become more elastic and stretchy. This makes sense as it can contribute to the discs having more room to move to areas they should not be, ire, laying at an angle and pressing on the spinal cord.

The tissue can also become less stretchy which will show up in scleroderma which cause the tissues of all tissues including heart, kidneys, liver, etc, to become more hardened. I don't have the right vocabulary to explain this so I hope Linda comes along and adds more info. Thanks.
« Last Edit: May 14, 2021, 06:31:33 PM by meirish »