Botox -- for pain etc.

[jetjetjet]

 Hay  all

Has anyone had botox injections for the purpose of muscle spasms - and chronic upper and lower back pain . Good , Bad , indifferent ??   

[loppylou68]

Yep I have them under skull behind ear and neck for reduction in head turning and a few in  shoulders for pain......helps while it lasts but runs out sooner than next session every 12 weeks... Definitely worth a try but it can be very hit an miss 

Good luck 🍀 

[jetjetjet]

That's what I am after and I value your opinion and advise -- The Dc. that is going to do it OR wants to do it { I am a little concerned } he replaced one of my best Dc's- Dc Megan , boy it hurt to lose her -- I don't know if i told you but since Dec. I lost 6 of my 7 top Dc's and you know how hard it is to lose just one good APS dc . he gives me Lidocaine shots every two months  and then i was going to therapy twice a week and once a week i got needles, dry  but they kept getting stuck when my muscles would spasm. but that therapy is done for now -- I am back in the GYM-- 7 miles a day on tread mill. no more recumbent bike till i get my new brace . I haven't had to put artificial skin and bandages on left foot for about 2 months now -- i was dressing it every 3 days  since Feb. 2 of 2015 . ANYWAYS . i need to find out all i can on the botox and Harry { that new DC ] isn't going to do it till i do -- i was in hopes that you might of know of some one with the APS that might of had some experience with it .  so any thing more you can find out would be greatly  appreciated.. 

 Thanks  my friend 

 Casey and I  

[Dawn22]

Hi! I am a licensed massage therapist, i specialize in chronic pain and injury management. I have seen many clients who've had botox injections for pain. 

I stongly recommend not doing it.

Most clients say it either did nothing or that it created a new problem. I have no memory of any ever telling me it helped.

Your muscles are finely balanced and highly intricate system. Shutting one down creates an additonal workload for the surrounding muscles that they are not equipped to handle.

IMO, based on years of experience, you're far better off saying away from any injection, including steroids, for pain and spasms.

If you take calcium and/or vit d, stop. These contribute highly to spasms and tension. (Vit d is ok if paired with mk-7)

Make sure you are hydrated, there is no hope reducing symptoms if you are not.

Also, for most people the cause of symptoms you describe is magnesium deficiency, and less often potassium deficiency. Magnesium relaxes the muscles and nerves.  (Granted with APS, its far more complex than one simple deficiency.)

I personally supplement magnesium and MSM and have found them to cut the pain down from near debilitating to manageable levels, so I am able to keep working without using any meds for pain.

There are lots of options that may be far more helpful than botox, without the harmful side effects. 

[Lure2 in reply to Dawn22]

May I ask if you have APS yourself as you have joined the Forum today?

We all have APS here and it is a fight to get to the right doctor and the right treatment. 

Best wishes from Kerstin in Stockholm

[Annegrethe]

Hi

I have Botox-injections every 3. month in my thigh - I have had a blodclot in my spinalcord, and my left leg cant function normally. I also have a lot of spasms - and I take Baklofen for those.

[Annegrethe in reply to Annegrethe]

I forgot to tell - it works for me - I wont miss my Botox

[jetjetjet in reply to Annegrethe]

I am on- baclofen- tizanidine -- Gaba -niacin -fish oil -Multi  vitamin- and 2 major pain killers- hydroxy-pravastatin and 1-5 Jantoven . 

[jordanibanani]

I get Botox every 12 weeks and have for 2 1/2 years. The goal is when we reach the right blood thinner combo (just moved to Arixtra/Plavix combo last night) and the IVIG kicks in (3rd dose today), I shouldn't need them. But out of every 12 weeks, I spend about 4 in a miserable flare. Two weeks before, and two weeks after. I just had my injections two days ago. I also get nerve blocks every six weeks. So I also received that and my migraine botox on Wednesday. 

[jetjetjet]

 I want to Thank everyone for the reply's

 I have such a problem with  these issues that to stray from the procedures that i have fought to get { 3 years } fighting Medicare  and  Medicaid -- all the Dc's that have fought  for and with me also have now either   retired or moved on with their career's  So i wouldn't have them behind me .  I am concerned that i might start a new battle by changing  and might invite a whole new battle. And i am getting to tired   to fight any more battles than i already got going . I am sure a lot of you can identify with that .  I was hoping for a land slide response  on the positive side - but in all  i can see so many mixed outlooks. I am on a lot of meds so to try to introduce any more takes an act of congress sort of speaking -- any time i get a new med all Dc's have to be notified and agree, I am talking  7 out of 12 which i call my heavy hitters and then it takes up to 2 months to make sure it doesn't throw off my INR that is always a mess anyways- so maybe i should tell the Dc . that wants to use it that it may NOT be such a great idea.  

Thanks again for all your input  and still if you happen on any other info  i would be glad to  hear of it . 

 Next battle is going to be with my Hemo - She is concerned about me still having DVT'S even with the Anti's i am already on - she picked a couple of injections { thou not approved for us Sludge Bloods  } . i need to get that info out to the group and hear  advise and experiences with them. That will be coming to light soon I think .  

 Casey and I   

[Lure2]

Hi Jim,

I wish you had just one Specialist who could tell the others what to do. Could you possibly contact Dr Megan and ask her what to do. She knows you and understands what a difficult situation you have. Could you move over to her new hospital or ask her for a referal or good advice to someone else if she can not have you any more. Change 6 - 7 doctors just like that is a bit much.

Hugs to you and Casey from

Kerstin

[jetjetjet in reply to Lure2]

She by law can't treat me . I think any medical contact could land her in deep trouble -- they have done it in the past but i hate to ask her to put herself in jeopardy . most all my Dc's are specialists. -I have to fight my battles as you know .I was up in Lebanon  the other day bring a Gal from the building here to her appointment < that is where DC Meg is  in Anesthesiology. I tried to get her a memo under CASEY  and my last name she would understand that !!  The `dept. personal i spoke to asked if i wanted a message sent to her Pager  and   I sad NO  in case she was in a meeting or the O.R . I am so afraid of getting her into trouble -- She had a hard time in my last appointment with her saying good by to Casey and i . Who knows maybe i will luck out and find a Dc that could replace her   !! ?? the one that did i have a feeling he is going to be a do nothing type - so i guess i just keep o n. u are right thou , if i could only get back the DC;you would remember their names -- MCCALL-- CHOU -Burn -Polliss--Segal--Bernini -Shannon --- That's when i was doing great  with the Dc's that wanted to learn and truly did wonderful things for me starting in 2009 -and then  huge leap forward in 2011. I guess after all the feed back on the Botox and my unique and lengthy problems  i should deny  this new Dc's want to do the Botox .

It is nice of you  to care enough  to share your concerns. 

Thanks my friend ------    Casey and I    

[MaryF Administrator]

You need to be careful in case of allergy, same with any new medication!  Do no rush into this, weigh it up carefully.    MaryF

[jetjetjet in reply to MaryF]

Yes Mary - i have gotten enough feed back so the best  case scenario would be to decline the botox at this time as i have so much to lose if it doesn't work I could actually set my self way back with my Insurance  paying for my injections i get now -- I had to battle with them for almost a year  to get back and i never did get my special cream reinstated , you know the one that all my Pain killers in it and being a topical it didn't text my liver as much .But anyway i could jeopardise the shots i get every other month  , and the Botox goes every 3 months so you could just imagine what a mess this could cause  on a maybe it would work . 

Thank You very much for your  concern and input - My next problem is going to be  , If i continue to get DVT"S the my Hemo is going to want to put me on injectables that I don't believe have been approved for us APS patients especially me . I will look up here report and get the names of her suggestions { we have discussed them before , not these particular ones  but some of the same I guess } I will get the names as i said  and get them to you people ,right now i have so much other issues that i am trying to get resolved .

 Best to all   Casey and I  

[jetjetjet]

Are you addressing me my friend ??

[jetjetjet]

Thanks " L " you are my Hero  or would that be Heron???